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8 August 2011 How Much Does that Medication Cost? A Study of Medicare Beneficiaries’ Knowledge of Out-of-Pocket Costs for Prescription Drugs on the Specialty Tier Summary Survey results show that many Medicare Part D beneficiaries do not know that specialty tiers require coinsurance rather than co-pays. Moreover, most are unaware that the out-of-pocket costs they may face for medicines on specialty tiers can be much higher than the typical copayment costs. Introduction Although Medicare Part D has succeeded in increasing prescription drug coverage among Medicare beneficiaries, 1,2 the program has been criticized for the complexity of its enrollment process 3 and the high out-of-pocket costs associated with filling some prescriptions. One particular Part D feature that has come under greater scrutiny in recent months is the benefit design and cost-sharing mechanism known as the specialty tier. By definition, a specialty tier drug is an expensive drug in that, according to the Centers for Medicare and Medicaid Services (“CMS”), a drug cannot be placed on 2011 specialty tiers unless it costs $600 or more per month. 4,5,6 Medical conditions for which specialty tier drugs are routinely used include cancer, rheumatoid arthritis, multiple sclerosis, HIV/AIDS, and kidney disease. Unlike other drugs for which beneficiaries might pay a fixed co-pay, drugs on specialty tiers require that beneficiaries pay a percentage—usually 25 or 33 percent—of the drug’s cost. Thus, individuals who are prescribed specialty tier drugs face higher out-of-pocket costs for their prescription drugs than they would if those drugs were subject to co-pays. Specialty tiers have attracted the attention of a number of different interest groups, including AARP, 7 the National Multiple Sclerosis Society, 8 the Leukemia & Lymphoma Society, 9 and the National Psoriasis Foundation. 10 Members of Congress have also expressed interest in the impact that specialty tiers have on Medicare beneficiaries’ prescription drug costs. For example, Representative Pete Stark (D-California), former Chairman of the House Ways and Means Committee’s Health Subcommittee, commissioned the Government Accountability Office (GAO) By Dr. Eugene P. Ericksen and Melissa A. Pittaoulis Pfizer commissioned this research, providing funding and comments.

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Page 1: How Much Does that Medication Cost?specialty tier drugs can cost a beneficiary hundreds of dollars each month (the minimum out-of-pocket cost for a specialty tier drug is $150), the

8 August 2011

How Much Does that Medication Cost? A Study of Medicare Beneficiaries’ Knowledge of Out-of-Pocket Costs for Prescription Drugs on the Specialty Tier

Summary

Survey results show that many Medicare Part D beneficiaries do not know that specialty tiers

require coinsurance rather than co-pays. Moreover, most are unaware that the out-of-pocket

costs they may face for medicines on specialty tiers can be much higher than the typical

copayment costs.

Introduction Although Medicare Part D has succeeded in increasing prescription drug coverage among

Medicare beneficiaries,1,2 the program has been criticized for the complexity of its enrollment

process3 and the high out-of-pocket costs associated with filling some prescriptions. One

particular Part D feature that has come under greater scrutiny in recent months is the benefit

design and cost-sharing mechanism known as the specialty tier. By definition, a specialty tier

drug is an expensive drug in that, according to the Centers for Medicare and Medicaid Services

(“CMS”), a drug cannot be placed on 2011 specialty tiers unless it costs $600 or more per

month.4,5,6 Medical conditions for which specialty tier drugs are routinely used include cancer,

rheumatoid arthritis, multiple sclerosis, HIV/AIDS, and kidney disease. Unlike other drugs for

which beneficiaries might pay a fixed co-pay, drugs on specialty tiers require that beneficiaries

pay a percentage—usually 25 or 33 percent—of the drug’s cost. Thus, individuals who are

prescribed specialty tier drugs face higher out-of-pocket costs for their prescription drugs than

they would if those drugs were subject to co-pays.

Specialty tiers have attracted the attention of a number of different interest groups, including

AARP,7 the National Multiple Sclerosis Society,8 the Leukemia & Lymphoma Society,9 and the

National Psoriasis Foundation.10 Members of Congress have also expressed interest in the

impact that specialty tiers have on Medicare beneficiaries’ prescription drug costs. For example,

Representative Pete Stark (D-California), former Chairman of the House Ways and Means

Committee’s Health Subcommittee, commissioned the Government Accountability Office (GAO)

By Dr. Eugene P. Ericksen and Melissa A. Pittaoulis

Pfizer commissioned this research, providing funding and comments.

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to investigate spending associated with high-cost drugs eligible for placement

on specialty tiers.11,12 Recently, Representative Hank Johnson (D-Georgia), has questioned

CMS regarding the basis for its decision to set the minimum threshold for placing a drug

on the specialty tier at $600 and its reasoning for holding it at that level for the past five

years.13,14 Given that the costs of prescription drugs continue to rise, Representative Johnson

“is concerned this threshold is being held to artificially low levels without explanation

or transparency.”15

Why are specialty tiers a concern? First, advocates for older and disabled populations want

to make sure that Medicare beneficiaries understand the coverage options offered under

Part D plans, including the potential out-of-pocket costs they might be expected to pay. Since

specialty tier drugs can cost a beneficiary hundreds of dollars each month (the minimum

out-of-pocket cost for a specialty tier drug is $150), the financial impact of being prescribed

a specialty tier drug is not insignificant. For seniors living on fixed incomes, these costs may

even be prohibitive. It is therefore important for individuals who are prescribed specialty tier

drugs to understand how tiering and formulary coverage varies by plan. Although the use of

specialty tiers is common in Medicare Part D, there is some variation in the specific drugs that

each plan places on its specialty tier.16 Research has shown that if a specialty-tier-eligible drug

is not placed on the specialty tier, it is usually placed on a lower tier, most often the preferred

brand tier.17 Thus, beneficiaries prescribed the same specialty-tier-eligible medication could pay

very different out-of-pocket costs depending on their choices of plans—some might pay a fixed

co-pay (generally around $3018), while those who are enrolled in plans that require they pay a

percentage of the drug’s cost might pay several hundred dollars.

Public health advocates are interested in specialty tiers because of the effect that out-of-pocket

costs may have on beneficiaries’ health. Although Medicare beneficiaries who use specialty

tier drugs for a few months would likely eventually reach the catastrophic coverage threshold,

there is concern that costs during the initial coverage period and doughnut hole would lead

to greater cost-related medication nonadherence.19 High out-of-pocket costs may also prompt

some beneficiaries to delay drug therapy or not begin it at all.20 Moreover, because specialty

tier drugs are expensive, Part D plans often place additional restrictions on their use through

utilization management strategies such as requiring prior authorization, step therapy, or

quantity limits.21 Such strategies are a concern for public health experts, who worry that these

procedures place costs ahead of patient well-being.

While interest in specialty tiers has mostly focused on their inclusion in Medicare Part D plans,

there is concern that more private insurance plans on the commercial market will begin to use

them.22 Although the use of specialty tiers among commercial plans is not as widespread, their

use may be spreading from Medicare Part D. For example, the Kaiser Family Foundation has

found that the percent of workers enrolled in employer health plans that include a fourth tier

has increased from 5 percent in 2005 to 13 percent in 2010.23 While not all of these fourth

tiers are specialty tiers, the growth of this segment suggests that more of these plans are

including specialty tiers.24 As such, several states have taken steps to prevent specialty tiers from

being adopted by the private insurance market. In 2010, New York became the first state to

ban specialty tiers from health insurance plans.25 Similar legislation is either being prepared or

pending in 16 other states, including California, Florida, Maryland, and Washington.26

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The subject of specialty tiers is also relevant in the context of health care reform. The Patient

Protection and Affordable Care Act, the health care reform law passed in 2010, requires

that each state set up health insurance exchanges27 that will become operational in 2014.

The US Department of Health and Human Services (“HHS”) is currently working to define

a package of essential benefits28 that must be covered under all plans participating in these

state-run exchanges. As part of this work, HHS will be setting guidelines for prescription drug

coverage cost-sharing. Given that specialty tiers can have a great impact on the affordability

of prescription drugs—particularly for individuals suffering from chronic, complex diseases—

the decision by HHS about whether to allow exchange plans to include specialty tiers is likely

to be discussed.

The Affordable Care Act also contains a provision aimed at increasing consumer awareness of

health plan coverage,29 and the question of whether the specialty tier cost-sharing structure

is transparent enough to meet this requirement is an important one.30 It is easy to imagine

how the unpredictability inherent in the cost-sharing requirements for specialty tiers could

be confusing for health care consumers. Moreover, even if an individual is aware of what the

specialty tier is, without considerable research, it would be difficult to keep up-to-date about

which medications are specialty tier drugs since formularies are frequently updated (e.g.,

drugs newly approved by the Food and Drug Administration are added and a drug may be

shifted from a lower tier to the specialty tier). This only adds to the complexity and hinders the

consumer’s ability to predict out-of-pocket costs for drugs covered by these plans.

ObjectiveIn this paper, we examine Medicare beneficiaries’ knowledge of the out-of-pocket costs

associated with drugs placed on specialty tiers. We explore this topic in two ways. First, we

ask respondents to report what they think their out-of-pocket costs would be for prescription

drugs commonly used to treat three specific medical conditions. The drugs used to treat two of

these conditions, rheumatoid arthritis and multiple sclerosis, are often found on specialty tiers,

whereas the drugs used to treat the third condition, hay fever, are not. Asking about drugs

that are found on both the specialty tier and those that are not allowed us to see whether

respondents recognized that the drugs used to treat chronic, complex conditions may have

substantially higher out-of-pocket costs than the drugs used to treat a typically more common,

but less serious, condition.

The second way we examined this topic was by asking respondents to report what they

thought their out-of-pocket costs would be for different tiers of prescription drugs. In other

words, rather than asking about specific medical conditions and prescription drugs, we asked

respondents to tell us how much they thought they would have to pay for generic, preferred

brand, non-preferred brand, and specialty tier drugs. This approach allowed us to assess

respondents’ knowledge of the basic cost-structure of their plans.

Background on Specialty Tiers in Medicare Part DTo date, few studies have focused on specialty tiers, and none have examined how

knowledgeable consumers are about them. Instead, existing studies generally describe the

trends in the use of specialty tiers by Medicare Part D prescription drug plans or examine the

impact of specialty tiers on beneficiaries’ out-of-pocket expenses and health.31

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The number of Part D plans using specialty tiers has increased over time

Prescription drug coverage is offered to Medicare beneficiaries through two primary channels,

stand-alone prescription drug plans (PDPs) or Medicare Advantage plans (“MA-PD plans”).32,33

Most Part D plans, whether PDPs or MA-PD plans, include specialty tiers. Moreover, the number

of plans using specialty tiers has increased since Part D was introduced in 2006. In Part D’s first

year, 63 percent of PDPs and 67 percent of MA-PD plans included a specialty tier; by 2008,

these percentages had increased to 76 percent and 90 percent, respectively.34 For the current

year, 2011, an estimated 85 percent of all PDPs have specialty tiers.35 Some of the plans without

specialty tiers do not use tiered cost sharing at all and instead use the standard benefit design

of 25 percent cost sharing for all drugs. If we examine enrollment in only those plans that use

tiering, we see that in 2009, 87 percent of beneficiaries enrolled in tiered-PDPs and 98 percent

of beneficiaries enrolled in tiered-MA-PDPs were in plans that used specialty tiers, compared to

82 percent and 69 percent, respectively, in 2006.36 As these figures demonstrate, the majority

of Medicare Part D beneficiaries are enrolled in plans that include a specialty tier.

Specialty tier drugs share some common characteristics

Drugs that are likely to be placed on the specialty tier share some common characteristics.

First, there are several medical conditions for which treatments are often placed on specialty

tiers. One study noted that the list of drugs that most consistently appeared on specialty tiers

included drugs used to treat cancer, autoimmune disorders, AIDS, and hepatitis C.37 According

to Avalere Health, three or more of the top 20 drugs used to treat multiple sclerosis, rheumatoid

arthritis, cancer, hepatitis C, and psoriasis are found on the specialty tier.38 Other diseases for

which specialty tier drugs are used include anemia, Crohn’s disease, HIV/AIDS, Fabry Disease,

and Gaucher Disease. Therapeutic class is another factor that is associated with specialty tier

placement. Previous research found that four classes of drugs (antineoplastics, immunologics,

antivirals, and antibacterials) accounted for nearly two-thirds of specialty tier drugs.39

A third factor related to specialty tier placement is the drug manufacturing process, with

biologics having a higher likelihood of appearing on specialty tiers. Biologics are biologically-

derived drugs, i.e., drugs that are made from living organisms as opposed to chemical agents,

and, as such, tend to be very expensive to manufacture.40 Drugs used to treat rheumatoid

arthritis, including Enbrel and Humira, are examples of biologics. A fourth common

characteristic of specialty drugs is that most are available only as brands, and many do not

have generic equivalents.41

Some predict that the number of drugs placed on specialty tiers will increase as more drugs that

require technically-advanced manufacturing processes are developed.42 In 2009, the average

PDP with a specialty tier has placed 135 drugs on a specialty tier, accounting for about 12

percent of the drugs on their formularies.43

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Background on Medicare Part D To examine how transparent out-of-pocket costs associated with specialty tiers are, we focus

on Medicare Part D plans, where specialty tiers are widely used. It may be useful, therefore,

to briefly summarize how Part D works. Seniors enrolling in Part D must choose a single plan

from among dozens of options. Plans may vary on a number of aspects, including the premiums

charged, the medications covered, and the amounts that must be paid out-of-pocket when

filling a prescription at the pharmacy. Each Medicare Part D plan is required to establish a

formulary that lists the drugs covered by the plan and the amounts which enrollees will be

responsible to pay out of pocket. These formularies must be made available to enrollees; each

plan enrollee receives a book listing the drugs covered by their plan. In addition, the formularies

are available on the Medicare website, allowing beneficiaries the opportunity to research

formulary coverage when making decisions about which plan to choose.

Beneficiaries participating in Part D plans share the costs of their prescription coverage with

both their plan insurers and Medicare. In addition to monthly premiums and deductibles,44

beneficiaries must also pay a portion of the costs of their prescriptions. These out-of-pocket

costs take one of two forms: a copayment, in which the beneficiary is responsible for

a fixed dollar amount, or coinsurance, in which the beneficiary pays a percentage of the

total drug cost.

The majority of Part D plans use tiered cost sharing.45 Such plans categorize prescription

drugs into different tiers and the out-of-pocket costs vary by tier. Among Part D PDPs,

a common tiered plan structure uses four tiers such as generic drugs, preferred brand name

drugs, non-preferred brand name drugs, and specialty drugs. A typical PDP charges co-pays

for the first three tiers, but coinsurance for the specialty tier.46 PDPs almost universally charge

coinsurance for the specialty tier. In 2009, 57 percent of Part D PDPs with specialty tiers

charged 33 percent coinsurance for specialty tier drugs, 37 percent charged 25 percent, and

the remaining 6 percent charged some other percentage.47 Since 2006, Part D beneficiaries have

seen coinsurance rates rise. Whereas in 2006, the median coinsurance rate was 25 percent, the

median coinsurance rate in 2010 was 30 percent.48

In order for seniors to make informed decisions about which Part D plan is optimal for

their situation, some knowledge about formulary coverage is necessary.49 Of course, some

medications will be impossible to research in advance since individuals cannot predict which

new illnesses they will have in the upcoming year. Nevertheless, if seniors have a clear

understanding of what the out-of-pocket costs required by the different plans are, they can

choose a plan that has a risk-level with which they are comfortable. The use of specialty tiers,

however, may complicate making such an assessment and raise the possibility that gaining

consumer awareness may be difficult.

MethodologyTo address our research objectives, we designed a survey questionnaire, which was then

administered by Knowledge Networks, using the web-enabled KnowledgePanel®, a probability-

based panel designed to be representative of the US population.50,51 Knowledge Networks

employs an address-based sampling frame and uses probability sampling to recruit its panel.52

Panel members are 18 and older and include persons living in cell phone only and non-Internet

households. Non-Internet households that are recruited to participate are given a netbook

computer with free Internet service.

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Data collection began on Wednesday, 11 May 2011 and ended on 16 May 2011. The average

time it took to complete the survey was 22.2 minutes.53 A total of 638 respondents qualified

and completed the survey. Knowledge Networks calculated sampling weights that allow

the results to be representative of the demographic make-up of the US population. Unless

otherwise noted, the results presented in this report are based on weighted data.

QuestionnaireQualified respondents included individuals who were enrolled in a Medicare Part D stand-

alone prescription drug plan and did not receive a low-income subsidy.54 After qualifying for

the survey, respondents were informed that the purpose of the survey was to learn about

their thoughts about Medicare Part D and that they would therefore be asked some questions

about their own prescription drug coverage. The first questions concerned the Medicare Part D

prescription plan in which the respondent was enrolled. Respondents were first asked to report

the Medicare Part D insurance plan in which they are enrolled for 2011. Respondents were

encouraged to refer to their Medicare prescription card for the specific plan name. Just under

half of respondents (48 percent) reported that they looked at their card for help in providing

this information.55

In the next section of the interview, we asked the respondents about their prescription drug

coverage for medicines used to treat three specific medical conditions: hay fever, rheumatoid

arthritis, and multiple sclerosis. To guard against question order effects, we randomized the

order of the medical conditions. For each condition, we asked respondents whether they had

ever heard of two of the drugs most commonly used to treat that condition, whether they

expected their plan to cover those drugs, what form their out-of-pocket costs would take (i.e.,

co-pay or coinsurance), and how much they believed their out-of-pocket costs would be if they

were prescribed those drugs. All respondents were asked about the same two hay fever drugs,

Flonase and Nasonex. Likewise, all respondents were asked about the same two rheumatoid

arthritis drugs, Enbrel and Humira. Four multiple sclerosis drugs were used in the survey, and

in order to minimize respondent burden, individual respondents were randomly assigned to be

asked about only two of these—either Avonex and Betaseron or Rebif and Copaxone.

In addition to asking about specific prescription drugs, we also asked about the out-of-pocket

costs associated with different tiers of prescription drugs. We first asked respondents to talk

about how much they pay out-of-pocket when they fill prescriptions at a pharmacy. We next

asked them if, when choosing their current plan, they had researched whether this plan covers

prescription drugs that they take on a regular basis. We then described four tiers of prescription

drugs—generic, preferred brand name, non-preferred brand name, and specialty drugs—that

are commonly used by prescription drug plans for determining out-of-pocket costs and asked

respondents whether they knew if their plan uses such tiers. For each tier level, we asked

respondents what form their out-of-pocket costs would take (co-pay or coinsurance) and how

much they think they would have to pay out of pocket for a 30-day supply of a prescription

drug in that tier.

The questionnaire concluded with some health-related and demographic background questions.

Respondents were asked whether they take prescription medicine on a daily basis, and if so,

how many different prescription drugs they take each day. We also asked respondents to report

their health status (excellent, very good, good, fair, or poor) and whether they or someone

in their immediate family or household have ever been diagnosed with hay fever, rheumatoid

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arthritis, multiple sclerosis, or cancer. In addition, we asked respondents to indicate whether

they or anyone in their immediate family or household have ever been prescribed any of the

drugs mentioned in the survey. Appendix A lists the survey questions on which the analyses in

this paper are based.

ResultsSample Characteristics

Table 1 presents a summary of the sample characteristics. The sample consisted of 638 persons

aged 65 or older.

Table 1. Sample Characteristics

Sample Characteristics Count Share

Gender

Male 256 40.1%

Female 382 59.9%

Total 638 100.0%

Age

65 to 69 223 35.0%

70 to 74 152 23.9%

75 to 79 125 19.6%

80 to 84 111 17.4%

85 or older 26 4.0%

Total 638 100.0%

Education

Less than High School 32 5.0%

High School Diploma 331 51.8%

Some College 111 17.5%

Bachelor’s Degree or Higher 164 25.7%

Total 638 100.0%

Income

Less than $15,000 60 9.5%

$15,000 to $19,999 37 5.9%

$20,000 to $24,999 51 8.0%

$25,000 to $29,999 47 7.3%

$30,000 to $49,999 209 32.8%

$50,000 to $74,999 116 18.2%

$75,000 to $99,999 57 9.0%

$100,000 or more 60 9.4%

Total 638 100.0%

Region of Residence

Northeast 132 20.7%

Midwest 177 27.8%

South 209 32.8%

West 119 18.7%

Total 638 100.0%

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Table 1. Sample Characteristics (continued)

Sample Characteristics Count Share

Self-Reported Health Status

Excellent 55 8.7%

Very Good 216 33.8%

Good 246 38.5%

Fair 97 15.2%

Poor 19 3.0%

Refused 5 0.8%

Total 638 100.0%

Number of Prescription Drugs Taken Daily

None 53 8.3%

One 60 9.5%

Two 96 15.1%

Three 140 21.9%

Four or More 278 43.6%

Don’t Know/Refused 10 1.6%

Total 638 100.0%

Sources:

Knowledge Networks Database: Age, Income, Education, and Region

NERA Survey

• Gender: The sample included more women than men; 59.9 percent of respondents were

women while 40.1 percent of respondents were men.

• Age: About 35 percent of the sample was between the ages of 65 and 69. Another

43.5 percent were between the ages of 70 and 79, while 21.5 percent were aged 80 years

or older.

• Education: Approximately 5 percent of the sample reported less than a high school

education. A little more than one-half of the sample, 51.8 percent, were high school

graduates. About 18 percent of respondents had completed some college, while 25.7 percent

hold a Bachelor’s degree or higher.

• Household Income: Almost 31 percent of respondents reported a household income

below $30,000. Nearly 60 percent of the sample reported household incomes between

$30,000 and $99,999. Few respondents, 9.4 percent, reported household incomes greater

than $100,000.

• Health Status: Slightly less than half the sample, 42.5 percent, reported being in very good

or excellent health. Another 38.5 percent reported good health, while 15.2 percent and 3.0

percent reported fair health and poor health, respectively.

• Prescription Medication: Ninety percent of respondents reported taking prescription

medication on a daily basis, with almost two-thirds of the entire sample taking three or more

prescription medications daily.

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Beneficiaries’ Awareness of Out-of-Pocket Costs for Specific Drugs

The objective of our survey was to learn about Medicare Part D beneficiaries’ awareness of

the out-of-pocket costs associated with specialty tier drugs. Our first approach to studying

this topic was to ask respondents about their beliefs about their plan coverage for six specific

prescription drugs, four of which are drugs that appear on specialty tiers and two of which

are drugs that appear on lower tiers. In order to simulate the experience of a beneficiary who

was newly diagnosed with a medical condition, we did not inform respondents about the tier

placement of any of these drugs. Instead, we instructed respondents to imagine that they have

been diagnosed with a condition (hay fever, rheumatoid arthritis, or multiple sclerosis), gave

them the names of two drugs commonly used to treat that condition, and asked them a series

of questions regarding their expectations about plan coverage and out-of-pocket costs for these

drugs. The series of questions was then repeated for the other two conditions.

To give some context to the survey respondents’ answers, we measured their awareness of the

different brands of prescription drugs used to treat hay fever, rheumatoid arthritis, and multiple

sclerosis. The survey results show that, whereas most respondents had heard of the brands

used to treat hay fever, less than 40 percent had heard of one or more of the rheumatoid

arthritis drugs and very few were familiar with the drugs used to treat multiple sclerosis. As

shown in Table 2, the survey found that 79.1 percent of respondents had heard of at least

one of the two hay fever drugs. About 64 percent of respondents had heard of both Flonase

and Nasonex, while 20.6 percent of respondents had heard of neither drug. In contrast,

37.2 percent of respondents had heard of at least one of the prescription drugs used to treat

rheumatoid arthritis—26.5 percent of respondents had heard of both, and 61.6 percent had

heard of neither. In further contrast, 93.2 percent of respondents had heard of neither multiple

sclerosis drug, only 1.1 percent had heard of at least one of the two drugs about which they

were asked, and 3.7 percent had heard of both of them. Since most respondents are unfamiliar

with the specific drugs used to treat rheumatoid arthritis and multiple sclerosis, their answers to

the survey questions about the out-of-pocket costs for these drugs will likely be based on their

beliefs about what kind of drug coverage they have, as opposed to actual knowledge of their

plan’s coverage for these drugs.

Table 2. Familiarity with Drugs Commonly Used to Treat Three Medical Conditions

Count Share

Hay Fever Drugs

Yes, Both 406 63.7%

Nasonex Only 62 9.6%

Flonase Only 37 5.8%

No, Both 131 20.6%

Refused 2 0.3%

Total 638 100.0%

Rheumatoid Arthritis Drugs

Yes, Both 169 26.5%

Enbrel Only 52 8.1%

Humira Only 16 2.5%

No, Both 393 61.6%

Refused 8 1.2%

Total 638 100.0%

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Table 2. Familiarity with Drugs Commonly Used to Treat Three Medical Conditions (continued)

Count Share

Multiple Sclerosis Drugs

Copaxone and Rebif Sample

Yes, Both 6 1.8%

Copaxone Only 1 0.5%

Rebif Only 2 0.7%

No, Both 297 95.2%

Refused 6 1.9%

Total 312 100.0%

Avonex and Betaseron Sample

Yes, Both 18 5.6%

Avonex Only 1 0.3%

Betaseron Only 3 0.8%

No, Both 297 91.3%

Refused 7 2.0%

Total 326 100.0%

Combined Sample

Heard of Both Drugs 24 3.7%

Heard of One Drug Only 7 1.1%

No, Both 594 93.2%

Refused 12 2.0%

Total 638 100.0%

Source: NERA Survey

Despite the fact that their familiarity with the brands differed, when asked about their

expectations regarding insurance coverage for the different brands, respondents gave similar

answers. As shown in Table 3, 75.1 percent expected at least one of the hay fever drugs

was covered by their prescription plan, and 68.3 percent expected both were covered. For

the rheumatoid arthritis drugs, 76.7 percent expected at least one of the drugs was covered

and 72.4 percent expected both were covered. For the multiple sclerosis drugs, 66.6 percent

of respondents expected their plan to cover at least one of the drugs, and 64.3 percent

expected both of the drugs they were asked about were covered. These results show that most

respondents expect their prescription plans to include coverage for serious, chronic diseases like

rheumatoid arthritis and multiple sclerosis.

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Table 3. Knowledge of Whether Respondent’s PDP Covers Drugs Commonly Used to Treat Three Medical Conditions

Count Share

Hay Fever Drugs

Yes, Both 436 68.3%

Flonase Only 10 1.6%

Nasonex Only 33 5.1%

No, Both 151 23.7%

Don’t Know/Refused 8 1.2%

Total 638 100.0%

Rheumatoid Arthritis Drugs

Yes, Both 462 72.4%

Enbrel Only 10 1.6%

Humira Only 17 2.7%

No, Both 135 21.2%

Don’t Know/Refused 14 2.1%

Total 638 100.0%

Multiple Sclerosis Drugs

Avonex/Betaseron Sample

Yes, Both 229 70.4%

Avonex Only 6 1.9%

Betaseron Only 4 1.4%

No, Both 82 25.1%

Don’t Know/Refused 4 1.3%

Total 326 100.0%

Copaxone/Rebif Sample

Yes, Both 181 58.0%

Copaxone Only 4 1.1%

Rebif Only 0 0.1%

No, Both 117 37.4%

Don’t Know/Refused 11 3.4%

Total 312 100.0%

Combined Sample

Both drugs covered 410 64.3%

One drug covered 14 2.3%

Neither drug covered 198 31.1%

Don’t Know/Refused 15 2.3%

Total 638 100.0%

Source: NERA Survey

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Because rheumatoid arthritis and multiple sclerosis are low prevalence diseases, few survey

respondents have actual experience with these conditions; prior to taking the survey, most

respondents likely gave little or no thought to whether their plans cover drugs used to treat

these diseases. For the questions on out-of-pocket costs, we therefore instructed respondents

to assume that their prescription drug plan included coverage for drugs used to treat these

conditions. We then asked respondents about what type of cost-sharing is required by their

plan. As shown in Table 4, for the hay fever drugs, about 63 percent of respondents said

that they would be responsible for a co-pay, while 27.5 percent reported that their plan used

coinsurance. For the rheumatoid arthritis drugs, 60.0 percent of respondents reported that they

would have a co-pay, while 32.4 percent reported that they would have to pay coinsurance. For

the multiple sclerosis drugs, 58.6 percent thought they would be charged a co-pay, while 33.1

percent thought they would have to pay coinsurance. In follow-up questions, the respondents

reported the amounts they thought they would have to pay out-of-pocket for the drugs in

question. In Table 5, we present summary statistics for these amounts.

Table 4. Respondents’ Answers Regarding the Form of their Out-of-Pocket Costs for Specific Prescription Drugs

Hay Fever Rheumatoid Arthritis Multiple Sclerosis

Co-Pay Amount 63.4% 60.0% 58.6%

Co-Insurance Percentage 27.5% 32.4% 33.1%

Would not have to pay anything 8.5% 5.2% 5.7%

Refused 0.6% 2.4% 2.7%

Total 100.0% 100.0% 100.0%

N 638 638 638

Source: NERA Survey

Table 5. Summary Statistics for Out-of-Pocket Costs for Specific Prescription Drugs

Hay Fever Rheumatoid Arthritis Multiple Sclerosis

Copay Respondents

5th Percentile $4.00 $4.00 $4.00

10th Percentile $5.00 $5.00 $5.00

25th Percentile $7.00 $7.00 $10.00

Median $10.00 $20.00 $25.00

75th Percentile $30.00 $44.00 $50.00

90th Percentile $50.00 $99.00 $100.00

95th Percentile $100.00 $100.00 $150.00

N 374 321 319

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As the survey shows, the percentage of respondents who believe that their insurance plan

charges co-pays for rheumatoid arthritis and multiple sclerosis drugs is similar to the percentage

that report they would have to pay a co-pay for hay fever drugs. These results demonstrate

that many beneficiaries are unaware that Part D insurance plans charge differently for the

expensive medicines used to treat complex, chronic diseases like rheumatoid arthritis and

multiple sclerosis. The amounts that respondents believe they would have to pay provide further

evidence that many seniors would be unprepared for the high costs of specialty tier drugs. For

a drug that costs $600 (the minimum threshold for placement of the specialty tier), the out-of-

pocket costs would be $150, assuming the plan uses a coinsurance rate of 25 percent. The

out-of-pocket costs respondents expected to pay for rheumatoid arthritis and multiple sclerosis

drugs are generally lower than this “floor.” The median co-pay amount reported by respondents

for rheumatoid arthritis drugs was $20, and 90 percent of respondents thought that the

co-pay would be $99 or less. Even the respondents who believed their insurance plan would

charge coinsurance for the rheumatoid arthritis and multiple sclerosis drugs reported out-of-

pocket costs that are much lower than they would encounter in the real world. For instance,

the median amount that respondents who thought they would pay coinsurance for multiple

sclerosis drugs reported was $45, and 90 percent of these respondents indicated that they

believed the out-of-pocket costs would be less than $200.

To further illustrate the magnitude of respondents’ mistaken beliefs about out-of-pocket costs

for rheumatoid arthritis and multiple sclerosis drugs, the table below compares the median

out-of-pocket costs for the average Part D plan to the survey respondents’ estimates for three

specialty tier drugs.56 The actual out-of-pocket cost of Humira, the least expensive drug on this

list, would be 6.7 times greater than the average survey respondent expects. The cost of filling

a prescription for Copaxone would be 19.2 times higher than the typical survey respondent

expects. Respondents clearly underestimate the out-of-pocket costs of specialty tier drugs.

Table 5. Summary Statistics for Out-of-Pocket Costs for Specific Prescription Drugs (continued)

Hay Fever Rheumatoid Arthritis Multiple Sclerosis

Coinsurance Respondents

5th Percentile $4.00 $6.00 $4.00

10th Percentile $6.00 $10.00 $7.00

25th Percentile $8.00 $23.00 $25.00

Median $15.00 $45.00 $45.00

75th Percentile $25.00 $75.00 $100.00

90th Percentile $50.00 $150.00 $200.00

95th Percentile $50.00 $300.00 $250.00

N 147 200 201

Source: NERA Survey

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Table 6. Comparison of Median Out-of-Pocket Costs for Rheumatoid Arthritis and Multiple Sclerosis Drugs

Average Enrollee Cost Median Cost Expected on Part D Specialty Tier by Survey Respondents Ratio

Humira $234 $35 6.7

Enbrel $474 $35 13.5

Copaxone $769 $40 19.2

Sources:

Kaiser Family Foundation. Medicare Part D 2010 Data Spotlight: Coverage of Top Brand-Name and Specialty Drugs. Available at:

http://www.kff.org/medicare/upload/8095.pdf. Accessed 11 November 2010.

NERA Survey

The survey results presented thus far suggest that most beneficiaries are unlikely to anticipate

the financial impact of being prescribed a drug on the specialty tier. Since few respondents had

personal experience with the medical conditions that are the focus of the survey question, it

is unlikely that many of them have thought about the costs of these specific medications prior

to completing the survey. Therefore, their answers represent their best guess as to what they

think these drugs would cost them if they were diagnosed with one of these conditions. In this

way, the survey experience is similar to the situation of a person newly-diagnosed with one of

these diseases. Having no reason to previously consider the costs of these drugs, they would

experience “sticker shock” at the out-of-pocket costs of their medication.

The survey findings described in this section suggest that many seniors are unaware that drugs

used to treat rheumatoid arthritis and multiple sclerosis are typically placed on specialty tiers.

These results do not, however, provide evidence that seniors are unaware of the costs of the

specialty tier drugs. In other words, it is possible that people do know that specialty tier drugs

are expensive; they may simply not have known that these specific drugs were specialty tier

drugs. To evaluate whether respondents are aware of the specialty tier, we therefore asked

questions about the tiers themselves. We turn to these results in the next section.

Beneficiaries’ Awareness of Out-of-Pocket Costs Associated with

Prescription Drug Tiers

To encourage respondents to focus on their knowledge about their plan’s benefit design,

we asked them to think back to the time when they chose to enroll in their plan and report

whether or not they had researched the plan to see if it covered the prescription medications

they regularly take. The majority of respondents, 75.9 percent, researched whether the drugs

they take are covered, while 21.1 percent reported that they had not researched drug coverage

and 3.1 percent did not answer the question. If we look only at those respondents who take a

daily medication, the percentage who researched whether their plan covers their medications is

78.5 percent, about the same as the entire sample. Thus, although most beneficiaries do some

research into the formulary coverage available through Part D plans, a sizeable minority do not

undertake such efforts, even though they take medication on a daily basis.

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We then presented respondents with a description of four different tiers, or categories, of drug

coverage that are commonly featured in Medicare plans: (1) generic drugs, (2) preferred brand

name drugs, (3) non-preferred brand name drugs, and (4) specialty drugs. After giving the

respondents time to review this description, we subsequently asked them if they knew whether

their prescription plan uses such tiers. The majority, or 75.4 percent, of respondents thought

their plan had tiers of coverage, 22.4 percent thought their plan did not use tiers, and 2.2

percent did not answer the question.

Respondents were then asked how much they thought their out-of-pocket costs would be for

drugs in each of these four tiers. Focusing first on generic drugs, 73.1 percent reported that

their out-of-pocket costs for a 30-day supply of generic drugs are charged as a co-pay. The

median co-pay was $7 and 90 percent of respondents reported co-pays that were $15 or less.

Almost 15 percent of respondents reported that they pay coinsurance for generic drugs, with

the median coinsurance percentage equal to 20 percent.

Table 7. Respondents’ Answers Regarding the Form of their Out-of-Pocket Costs for Prescription Drug Tiers

Preferred Non-Preferred Generic Brand Name Brand Name Specialty

Co-Pay 73.1% 67.8% 60.4% 50.8%

Co-Insurance Percentage 14.6% 25.7% 29.2% 42.2%

Would not have to pay anything 9.3% 3.9% 6.0% 3.9%

Refused 3.0% 2.6% 4.4% 3.1%

Total 100.0% 100.0% 100.0% 100.0%

N 638 638 638 638

Source: NERA Survey

Table 8. Summary Statistics for Out-of-Pocket Costs for Prescription Drug Tiers

Preferred Non-Preferred Generic Brand Name Brand Name Specialty

Copay Respondents

5th Percentile $1.00 $4.00 $2.00 $3.00

10th Percentile $3.00 $6.00 $5.00 $5.00

25th Percentile $5.00 $10.00 $9.00 $15.00

Median $7.00 $20.00 $20.00 $30.00

75th Percentile $10.00 $40.00 $50.00 $60.00

90th Percentile $15.00 $57.00 $88.00 $120.00

95th Percentile $21.00 $90.00 $100.00 $200.00

N 435 383 336 273

Source: NERA Survey

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For a 30-day supply of a preferred brand name drug, 67.8 percent reported that they would

have to pay a co-pay at the pharmacy. The median co-pay was $20 and 90 percent of

respondents reported co-pays that were $57 or less. Just over one-quarter of respondents, or

25.7 percent, indicated that they pay coinsurance for preferred brand name drugs. The median

coinsurance percentage for this group was 25 percent.

For the next tier, non-preferred brand name drugs, 60.4 percent reported that they would

have to pay a co-pay for a 30-day supply. The median co-pay was $20 and 90 percent of

respondents reported co-pays that were $88 or less. Almost 30 percent of respondents said

they would have to pay a percentage of the total drug cost, rather than a co-pay. The median

reported coinsurance percentage for non-preferred brand name drugs was 33 percent.

Turning to specialty drugs, 50.8 percent said they would have to pay a co-pay for a 30-day

supply. The median co-pay was $30 and 90 percent of respondents reported co-pays that

were $120 or less. About 42 percent of respondents indicated that they would be charged

coinsurance for a drug on the specialty tier. The median coinsurance percentage was

40 percent.

The survey shows that half of respondents mistakenly believed that their plan would require

them to pay a co-pay rather than coinsurance for a drug on the specialty tier. These results

suggest that many beneficiaries are unaware that most Part D insurance plans using tiered cost-

sharing are structured so that participants pay a proportion of the costs for expensive drugs. To

further investigate this issue, we restricted our analysis to only those respondents who reported

that their plan used tiers.57 This approach allowed us to focus on beneficiaries who are most

at-risk for being surprised by the high out-of-pocket costs for specialty tier drugs. When we

look only at beneficiaries who report that they are enrolled in Part D plans that use tiered cost-

sharing, the results remain largely the same, with about 51.4 percent of respondents in tiered

plans reporting that they would have to pay a copayment for specialty tier drugs.

In addition to being unaware that out-of-pocket costs for specialty tier drugs are based on

coinsurance rates, many survey respondents underestimated the costs of specialty tier drugs. As

mentioned earlier, to be on a specialty tier, a drug must cost a minimum of $600. Even at this

lowest price point, if we assume the coinsurance percentage is 25 percent, the out-of-pocket

costs would be $150. Assuming coinsurance rates of 30 and 33 percent, the out-of-pocket costs

would be $180 and $198, respectively. Yet, the survey respondents thought it would cost much

less to fill a prescription for a specialty tier drug. Of the people who thought they would have

a co-pay for a drug on the specialty tier, the average respondent expected a co-pay of $30 and

90 percent believed that co-pay would be $120 or less. These respondents clearly are unaware

that out-of-pocket costs for specialty tier drugs are likely to be much higher.

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Comparison of Survey Reports to Actual Plan Coverage

Because respondents are enrolled in plans with variations in coverage and some plans require

coinsurance for all drugs, it is possible that the survey results overestimate the percentage of

respondents who do not understand specialty tiers. To test this possibility, we focused on the

subset of 520 respondents who were able to name the specific Part D plan in which they were

enrolled.58 Focusing on this subset allowed us to compare these respondents’ survey results to

their actual plan coverage. The results described below lend further support to the conclusions

that (1) many beneficiaries are unaware that specialty tiers use coinsurance and (2) beneficiaries

underestimate the amounts they would be required to pay out-of-pocket for specialty tier drugs.

Beginning with the prescription drugs commonly used to treat hay fever, rheumatoid arthritis,

and multiple sclerosis, we see that a sizeable share of respondents would not be prepared

for the high costs of specialty drugs. As shown in Table 9, while 58.8 percent of respondents

correctly identified the form of cost-sharing required for a prescription of Nasonex, over half of

respondents incorrectly believed that the drugs used to treat rheumatoid arthritis and multiple

sclerosis would require co-pays.59

Table 9. Comparison of Respondents’ Survey Answers to Actual Plan Coverage, Drugs Used to Treat Hay Fever, Rheumatoid Arthritis, and Multiple Sclerosis

Actual Plan

Survey Reports Copay Coinsurance Not Covered Share Correct Share Incorrect

Flonase

Co-Pay 12.1% 1.7% 52.3%

Co-Insurance Percentage 3.3% 1.2% 22.1% 13.3% 86.7%Would not have to pay anything 1.0% 0.2% 5.2%

Refused 0.0% 0.0% 1.0%

Nasonex

Co-Pay 50.8% 12.9% 2.5%

Co-Insurance Percentage 17.5% 8.1% 1.0% 58.8% 41.2%Would not have to pay anything 4.4% 1.5% 0.4%

Refused 0.8% 0.2% 0.0%

Enbrel

Co-Pay 0.0% 54.0% 2.7%

Co-Insurance Percentage 0.0% 35.6% 1.9% 35.6% 64.4%Would not have to pay anything 0.0% 3.7% 0.6%

Refused 0.0% 1.2% 0.4%

Humira

Co-Pay 0.0% 56.2% 0.6%

Co-Insurance Percentage 0.0% 35.8% 1.7% 35.8% 64.2%Would not have to pay anything 0.0% 3.8% 0.4%

Refused 0.0% 1.5% 0.0%

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Turning to the prescription drug tiers, we see a similar result. As the tier level increases, the

percentage of respondents who correctly identified the cost-sharing form required by their plan

declines. As shown in Table 10, about 71.5 percent correctly identified the form of payment

required for generic drugs, 62.5 percent correctly identified the form of payment for preferred

prescription drugs, 60.2 percent correctly identified the form of payment for non-preferred

prescription drugs, and 46.7 percent correctly identified the form of payment for specialty tiers.

Thus, while all of these respondents’ plans used coinsurance for the specialty tier, less than half

of respondents were aware that they would have to pay a percentage of the cost of drugs on

the specialty tier.

Table 9. Comparison of Respondents’ Survey Answers to Actual Plan Coverage, Drugs Used to Treat Hay Fever, Rheumatoid Arthritis, and Multiple Sclerosis (continued)

Actual Plan

Survey Reports Copay Coinsurance Not Covered Share Correct Share Incorrect

Avonex

Co-Pay 0.0% 56.3% 1.6%

Co-Insurance Percentage 0.0% 34.0% 0.8% 34.0% 66.0%Would not have to pay anything 0.0% 4.3% 0.8%

Refused 0.0% 2.3% 0.0%

Betaseron

Co-Pay 0.0% 55.1% 2.7%

Co-Insurance Percentage 0.0% 33.6% 1.2% 33.6% 64.1%Would not have to pay anything 0.0% 4.3% 0.8%

Refused 0.0% 0.0% 0.0%

Copaxone

Co-Pay 0.0% 55.3% 1.1%

Co-Insurance Percentage 0.0% 37.5% 1.5% 37.5% 62.5%Would not have to pay anything 0.0% 3.0% 0.4%

Refused 0.0% 1.1% 0.0%

Rebif

Co-Pay 0.0% 55.3% 1.1%

Co-Insurance Percentage 0.0% 37.9% 1.1% 37.9% 62.1%Would not have to pay anything 0.0% 3.0% 0.4%

Refused 0.0% 1.1% 0.0%

Notes:

* The total number of respondents is 520. For the multiple sclerosis drugs, 256 respondents were asked about Avonex and Betaseron, while 264 were asked about Copaxone and Rebif.

Source: NERA Survey

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Table 10. Comparison of Respondents’ Survey Answers to Actual Plan Coverage, Prescription Drug Tiers

Actual Plan

Survey Reports Copay Coinsurance Share Correct Share Incorrect

Generic

Co-Pay 70.6% 2.5%

Co-Insurance Percentage 13.1% 1.0% 71.5% 28.5% Would not have to pay anything 11.3% 0.4%

Refused 1.2% 0.0%

Preferred Brand

Co-Pay 57.1% 8.3%

Co-Insurance Percentage 24.4% 5.4% 62.5% 37.5% Would not have to pay anything 2.9% 0.2%

Refused 1.7% 0.0%

Non-Preferred Brand

Co-Pay 46.5% 12.7%

Co-Insurance Percentage 19.4% 13.7% 60.2% 39.8%

Would not have to pay anything 3.8% 1.0%

Refused 2.3% 0.6%

Specialty

Co-Pay 0.0% 47.3%

Co-Insurance Percentage 0.0% 46.7% 46.7% 53.3% Would not have to pay anything 0.0% 2.7%

Refused 0.0% 3.3%

Notes:

* The total number of respondents is 520. For the multiple sclerosis drugs, 256 respondents were asked about Avonex and Betaseron, while 264 were asked about Copaxone and Rebif.

Source: NERA Survey

ConclusionAlthough Medicare Part D has expanded access to prescription drugs, many beneficiaries remain

unaware of the potentially high out-of-pocket costs associated with their particular plan. The

survey results described here indicate that while most respondents are aware that plans use

tiered cost-sharing, a substantial percentage remains uninformed about the out-of-pocket costs

associated with specialty tier drugs. These results suggest that, if confronted with having to

take a drug on a specialty tier, many beneficiaries would be surprised to learn that they are

responsible for a percentage of the cost rather than a flat co-pay. Furthermore, even those

respondents who are aware that they would have to pay a percentage of the cost of a specialty

tier drug underestimate the amount they would have to pay.

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Appendix A. Survey Questions

Questions about Hay Fever Drugs

Imagine that you have been told by a doctor or other health care professional that you had Hay

Fever. Two commonly prescribed drugs used to treat Hay Fever are Flonase and Nasonex.

1. Have you ever heard of Flonase or Nasonex?

1. Yes, but only Nasonex

2. Yes, but only Flonase

3. Yes, I have heard of both Flonase and Nasonex

4. No, I have not heard of either drug

2. Would you expect that your prescription drug plan covers Flonase and Nasonex?

1. Yes, but only Flonase

2. Yes, but only Nasonex

3. Yes, both Flonase and Nasonex

4. No

3. Please assume that your prescription plan covers all or some of the cost of Flonase and

Nasonex. If your doctor prescribed you one of these drugs used to treat Hay Fever, which

of the following best describes the out-of-pocket costs you would have to pay when you fill

the prescription at your pharmacy?

1. A fixed dollar amount, sometimes called a co-pay.

2. A percentage of the cost of the drug, sometimes called coinsurance.

3. I would not have to pay anything.

4. [If Q3=co-pay] If your doctor prescribed you one of these drugs used to treat Hay Fever,

how much do you think your prescription plan would require you to pay out of pocket?

5. [If Q3=coinsurance] If your doctor prescribed you one of these drugs used to treat Hay

Fever, what percentage of the drug’s cost do you think your prescription plan would require

you to pay out of pocket?

6. [If Q3=coinsurance] You mentioned that you think your prescription plan would require you

to pay [X] percent of the cost of one of these Hay Fever drugs. How much do you think that

would be in dollars?

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Questions about Rheumatoid Arthritis Drugs

Imagine that you have been told by a doctor or other health care professional that you had

Rheumatoid Arthritis. Two commonly prescribed drugs used to treat Rheumatoid Arthritis are

Enbrel and Humira.

1. Have you ever heard of Enbrel or Humira?

1. Yes, but Enbrel only

2. Yes, but Humira only

3. Yes, I have heard of both Enbrel and Humira

4. No, I have not heard of either drug

2. Would you expect that your prescription drug plan covers Enbrel and Humira?

1. Yes, but only Enbrel

2. Yes, but only Humira

3. Yes, both Enbrel and Humira

4. No

3. Please assume that your prescription plan covers all or some of the cost of Enbrel and

Humira. If your doctor prescribed you one of these drugs used to treat Rheumatoid

Arthritis, which of the following best describes the out-of-pocket costs you would have to

pay when you fill the prescription at your pharmacy?

1. A fixed dollar amount, sometimes called a co-pay.

2. A percentage of the cost of the drug, sometimes called coinsurance.

3. I would not have to pay anything.

4. [If Q3=co-pay] If your doctor prescribed you one of these drugs used to treat Rheumatoid

Arthritis, how much do you think your prescription plan would require you to pay out of

pocket when you fill the prescription at your pharmacy?

5. [If Q3=coinsurance] If your doctor prescribed you one of these drugs used to treat

Rheumatoid Arthritis, what percentage of the drug’s cost do you think your

prescription plan would require you to pay out of pocket when you fill the prescription

at your pharmacy?

6. [If Q3=coinsurance] You mentioned that you think your prescription plan would require

you to pay [X] percent of the cost of one of these Rheumatoid Arthritis drugs. How much

do you think that would be in dollars?

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Questions about Multiple Sclerosis Drugs—Avonex and Betaseron

Imagine that you have been told by a doctor or other health care professional that you had

Multiple Sclerosis. Two of the most commonly prescribed drugs used to treat Multiple Sclerosis

are Avonex and Betaseron.

1. Have you ever heard of Avonex or Betaseron?

1. Yes, but only Avonex

2. Yes, but only Betaseron

3. Yes, I have heard of both Avonex and Betaseron

4. No, I have not heard of either drug

2. Would you expect that your prescription plan covers Avonex and Betaseron?

1. Yes, but only Avonex

2. Yes, but only Betaseron

3. Yes, both Avonex and Betaseron

4. No

3. Please assume that your prescription plan covers all or some of the cost of Avonex and

Betaseron. If your doctor prescribed you one of these drugs used to treat Multiple Sclerosis,

which of the following best describes the out-of-pocket costs you would have to pay when

you fill the prescription at your pharmacy?

1. A fixed dollar amount, sometimes called a co-pay.

2. A percentage of the cost of the drug, sometimes called coinsurance.

3. I would not have to pay anything.

4. [If Q3=co-pay] If your doctor prescribed you one of these drugs used to treat Multiple

Sclerosis, how much do you think your prescription plan would require you to pay out of

pocket when you fill the prescription at your pharmacy?

5. [If Q3=coinsurance] If your doctor prescribed you one of these drugs used to treat Multiple

Sclerosis, what percentage of the drug’s cost do you think your prescription plan would

require you to pay out of pocket when you fill the prescription at your pharmacy?

6. [If Q3=coinsurance] You mentioned that you think your prescription plan would require you

to pay [X] percent of the cost of one of these Multiple Sclerosis drugs. How much do you

think that would be in dollars?

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Questions about Multiple Sclerosis Drugs—Copaxone and Rebif

Imagine that you have been told by a doctor or other health care professional that you had

Multiple Sclerosis. Two of the most commonly prescribed drugs used to treat Multiple Sclerosis

are Copaxone and Rebif.

1. Have you ever heard of Copaxone or Rebif?

1. Yes, but only Copaxone

2. Yes, but only Rebif

3. Yes, I have heard of both Copaxone and Rebif

4. No, I have not heard of either drug

2. Would you expect that your prescription plan covers Copaxone and Rebif?

1. Yes, but only Copaxone

2. Yes, but only Rebif

3. Yes, both Copaxone and Rebif

4. No

3. Please assume that your prescription plan covers all or some of the cost of Copaxone and

Rebif. If your doctor prescribed you one of these drugs used to treat Multiple Sclerosis,

which of the following best describes the out-of-pocket costs you would have to pay when

you fill the prescription at your pharmacy?

1. A fixed dollar amount, sometimes called a co-pay.

2. A percentage of the cost of the drug, sometimes called coinsurance.

3. I would not have to pay anything.

4. [If Q3=co-pay] If your doctor prescribed you one of these drugs used to treat Multiple

Sclerosis, how much do you think your prescription plan would require you to pay out of

pocket when you fill the prescription at your pharmacy?

5. [If Q3=coinsurance] If your doctor prescribed you one of these drugs used to treat Multiple

Sclerosis, what percentage of the drug’s cost do you think your prescription plan would

require you to pay out of pocket when you fill the prescription at your pharmacy?

6. [If Q3=coinsurance] You mentioned that you think your prescription plan would require you

to pay [X] percent of the cost of one of these Multiple Sclerosis drugs. How much do you

think that would be in dollars?

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Preface to Questions about Tiers

Each Medicare Part D prescription drug plan has a list of prescription drugs they cover and

these drugs are sometimes grouped into different categories called tiers. Four common tiers are

generic, preferred, non-preferred, and specialty. The amount a person has to pay out of pocket

for a prescription drug depends on which of these categories it falls in.

Generic drugs are non-brand name drugs and have the lowest out-of-pocket costs.

Preferred drugs are brand name drugs and these have the second lowest out-of-pocket costs.

Non-preferred drugs are brand name drugs that cost more than preferred drugs.

Specialty drugs are expensive medicines that are typically used to treat complex,

chronic diseases.

Questions about Generic Drugs

1. Imagine that your doctor prescribed you a generic brand name drug and this drug is

covered by your prescription plan. Which of the following best describes the out-of-pocket

costs you would have to pay for a 30-day supply of a generic prescription drug?

1. A fixed dollar amount, sometimes called a co-pay.

2. A percentage of the cost of the drug, sometimes called coinsurance.

3. I would not have to pay anything.

2. [If Q1=co-pay] How much do you think your prescription plan would require you to pay out

of pocket for a 30-day supply of a generic drug?

3. [If Q1=coinsurance] What percentage of the generic drug’s cost do you think your

prescription plan would require you to pay out of pocket?

Questions about Preferred Brand Drugs

1. Imagine that your doctor prescribed you a preferred brand name drug and this drug is

covered by your prescription plan. Which of the following best describes the out-of-

pocket costs you would have to pay for a 30-day supply of a preferred brand name

prescription drug?

1. A fixed dollar amount, sometimes called a co-pay.

2. A percentage of the cost of the drug, sometimes called coinsurance.

3. I would not have to pay anything.

2. [If Q1=co-pay] How much do you think your prescription plan would require you to pay out

of pocket for a 30-day supply of a preferred brand name drug?

3. [If Q1=coinsurance] What percentage of the preferred brand name drug’s cost do you think

your prescription plan would require you to pay out of pocket?

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Questions about Non-Preferred Brand Drugs

1. Imagine that your doctor prescribed you a non-preferred brand name drug and this drug

is covered by your prescription plan. Which of the following best describes the out-of-

pocket costs you would have to pay for a 30-day supply of a non-preferred brand name

prescription drug?

1. A fixed dollar amount, sometimes called a co-pay.

2. A percentage of the cost of the drug, sometimes called coinsurance.

3. I would not have to pay anything.

2. [If Q1=co-pay] How much do you think your prescription plan would require you to pay out

of pocket for a 30-day supply of a non-preferred brand name drug?

3. [If Q1=coinsurance] What percentage of the non-preferred brand name drug’s cost do you

think your prescription plan would require you to pay out of pocket?

Questions about Specialty Tier Drugs

1. Imagine that your doctor prescribed you a specialty drug and this drug is covered by your

prescription plan. Which of the following best describes the out-of-pocket costs you would

have to pay for a 30-day supply of a specialty drug?

1. A fixed dollar amount, sometimes called a co-pay.

2. A percentage of the cost of the drug, sometimes called coinsurance.

3. I would not have to pay anything.

2. [If Q1=co-pay] How much do you think your prescription plan would require you to pay out

of pocket for a 30-day supply of a specialty drug?

3. [If Q1=coinsurance] What percentage of the specialty drug’s cost do you think your

prescription plan would require you to pay out of pocket?

Background Questions

1. How many different prescription drugs do you take each day?

2. Thinking about your own health status, in general, would you say your health is excellent,

very good, good, fair, or poor?

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1 Neuman, Patricia, and Juliette Cubanski. 2009. “Medicare Part D Update—Lessons Learned and Unfinished Business.” The New England Journal of Medicine 361(4): 406-414.

2 Kaiser Family Foundation. Medicare Fact Sheet: The Medicare Prescription Drug Benefit. Available at: http://www.kff.org/medicare/upload/7044-11.pdf. Accessed 11 November 2010.

3 Thaler, Richard H. and Cass R. Sunstein. 2009. “Chapter 10: Prescription Drugs: Part D for Daunting.” Nudge: Improving Decisions about Health, Wealth, and Happiness. Penguin Books.

4 Hargrave, Elizabeth, Jack Hoadley, and Katie Merrell. 2009. “Drugs on Specialty Tiers in Part D: Final Report.” Report to Medicare Payment Advisory Commission.

5 Kaiser Family Foundation. Medicare Part D 2010 Data Spotlight: Coverage of Top Brand-Name and Specialty Drugs. Available at: http://www.kff.org/medicare/upload/8095.pdf. Accessed 11 November 2010.

6 CMS regulations further require that only one tier is designated as a specialty tier; cost-sharing in the specialty tier is limited to 25 percent after the deductible and before the initial coverage limit (or 33 percent in an actuarially equivalent plan with decreased or no deductible under alternative prescription drug coverage designs); and only Part D drugs with sponsor-negotiated prices that exceed the dollar per month amount established by CMS in the annual Call Letter are placed in the specialty tier. The threshold has been set at $600 for the past five years. See CMS. “Medicare Prescription Drug Benefit Manual. Chapter 6-Part D Drugs and Formulary Requirements,” http://www.cms.gov/PrescriptionDrugCovContra/Downloads/Chapter6.pdf.

7 Walsh, Bill. 9 March 2009. “The Tier 4 Phenomenon: Shifting the High Cost of Drugs to Consumers.” AARP Strategic Analysis & Intelligence (SAI) Briefing Report.

8 Article dated 4 May 2011. “Landmark Patient Protection Legislation to End “Specialty Tier” Health Insurance Coverage Passes in California Assembly Health Committee,” http://www.nationalmssociety.org/chapters/CAN/chapter-news/chapter-news-detail/index.aspx?nid=5005.

9 The Leukemia and Lymphoma Society’s Legislative Agenda for the First Session of the 112th Congress, pages 4-5. Published in 2011.

10 National Psoriasis Foundation Advocacy Initiative to Help End Specialty Tiers. Accessed July 2011. http://www.psoriasis.org/page.aspx?pid=1915.

11 http://www.stark.house.gov/index.php?option=com_content&task=view&id=1520&Itemid=99999999.

12 United States Government Accountability Office. Report to the Chairman, Subcommittee on Health, Committee on Ways and Means, House of Representatives. January 2010. “Medicare Part D: Spending, Beneficiary Cost Sharing, and Cost-Containment Efforts for High Cost Drugs Eligible for a Specialty Tier.”

13 Letter dated 11 May 2011 from Representative Hank Johnson to Dr. Donald Berwick of the Centers for Medicare and Medicaid Services.

14 Congressman Johnson has also raised concern about the CMS policy that precludes beneficiaries needing drugs on specialty tiers from seeking relief from the high cost-sharing by utilizing the exceptions process. For drugs on other tiers, for example, the non-preferred brand tier, beneficiaries can appeal for an exception from that tier’s cost-sharing and request to pay the copayment of a lower tier by demonstrating medical necessity.

15 http://hankjohnson.house.gov/2011/05/rep-johnson-to-medicare-clarify-why-specialty-tier-drug-threshold-remains-600.shtml.

16 The primary requirement from CMS is that the monthly drug cost meet a minimum threshold (currently $600). It is therefore up to individual insurance companies to decide whether a particular drug should be put on the specialty tier.

17 Hargrave, Elizabeth, Jack Hoadley, and Katie Merrell. 2009. “Drugs on Specialty Tiers in Part D: Final Report.” Report to Medicare Payment Advisory Commission.

18 The average cost sharing for preferred brand drugs in 2008 was $29.86. Kaiser Family Foundation. Medicare Prescription Drug Plans in 2008 And Key Changes Since 2006: Summary of Findings. Available at: http://www.kff.org/medicare/upload/7762.pdf. Accessed 11 November 2010.

19 Several studies have linked high out-of-pocket costs with medication nonadherence. See, for example, Milliman, Inc. 25 January 2010. “Parity for Oral and Intravenous/Injected Cancer Drugs.”;Sun, Shawn X., Kwan Y. Lee, and Meghana Arura. 2009. “Examining Part D Beneficiaries’ Medication Use in the Doughnut Hole.” The American Journal of Pharmacy Benefits 1(1): 19-28; Ye X, Gross CR, Schommer J, Cline R, St Peter WL. Association between copayment and adherence to statin treatment initiated after coronary heart disease hospitalization: a longitudinal, retrospective, cohort study. Clin Ther. 2007 Dec;29(12):2748-57; Zhang, Yuting, Julie Marie Donohue, Joseph P. Newhouse, et al. 2009. “The Effects of the Coverage Gap on Drug Spending: A Closer Look at Medicare Part D.” Health Affairs 28, w317-w325.

20 Blesser Streeter, Sonya, Schwartzberg, Lee, Husain, Nadia, and Michael Johnsrud. 2011. “Patient and Plan Characteristics Affecting Abandonment of Oral Oncolytic Prescriptions.” Journal of Oncology Practice 7(3S): 46S-51S.

21 Hargrave, Elizabeth, Jack Hoadley, and Katie Merrell. 2009. “Drugs on Specialty Tiers in Part D: Final Report.” Report to Medicare Payment Advisory Commission.

22 Walsh, Bill. 9 March 2009. “The Tier 4 Phenomenon: Shifting the High Cost of Drugs to Consumers.” AARP Strategic Analysis & Intelligence (SAI) Briefing Report.

23 The percentage of workers enrolled in employer health plans that include a specialty tier varies by plan type, with workers enrolled in “point of service” plans being the most likely to see a fourth tier (24 percent of workers in POS plans face fourth tier) See Kaiser Family Foundation and Health Research & Educational Trust. 2010. Employer Health Benefits 2010 Annual Survey.

24 Among workers with four or more tiers of cost sharing, 24 percent faced fourth tiers that used coinsurance.

25 Collier, Andrea King. 2011. “Penny Wise: Tiers of Pain – Is your medication safe from specialty-tier pricing?” Neurology Now 7(3): 42-43.

26 http://www.fffenterprises.com/Blogs/Reimbursement/page/More-Legislation-Introduced-to-Ban-Specialty-Tiers-in-States.aspx.

27 The HHS website defines an exchange as “a State-based competitive marketplace where individuals and small businesses will be able to purchase affordable private health insurance and have the same insurance choices as Members of Congress.” See http://www.healthcare.gov/news/factsheets/exchanges07112011b.html.

28 According to the Affordable Care Act, essential health benefits include the following 11 categories of services: ambulatory patient services; emergency services; hospitalization; maternity and newborn care; mental health and substance use disorder services, including behavioral health treatment; prescription drugs; rehabilitative and habilitative services and devices; laboratory services; preventive and wellness services and chronic disease management; and pediatric services, including oral and vision care. See http://www.healthcare.gov/glossary/e/essential.html.

Notes

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29 Specifically, section 2715 of the ACA mandates that insurance plans provide enrollees with “a summary of benefits and coverage explanation that accurately describes the benefits and coverage under the applicable plan or coverage.” In addition, insurance plans must inform enrollees with 60 days notice of any material modifications to their plan.

30 http://www.dol.gov/ebsa/faqs/faq-aca5.html.

31 See, for example, Polinski, J.M., Mohr, P.E., & Johnson, L. (2009). Impact of Medicare Part D on Access to and Cost Sharing for Specialty Biologic Medications for Beneficiaries with Rheumatoid Arthritis. Arthritis & Rheumatism 61(6): 745-754; L. S. Schwartzberg, S. B. Streeter, N. Husain, M. Johnsrud. (2011). Patient and plan characteristics affecting abandonment of oral oncolytic prescriptions. American Journal of Managed Care, 17(5 Spec No.): SP38-SP44; Gleason, P. et al. (2009). Association of Prescription Abandonment with Cost Share for High-Cost Specialty Pharmacy Medications. Journal of Managed Care Pharmacy, 15(8): 648-58.

32 The stand-alone prescription drug plans are available to seniors who receive their Medicare Part A (Hospital Insurance) and B (Medical Insurance) benefits through the traditional “fee for service” Medicare program. On the other hand, beneficiaries who have enrolled in Part C, known as Medicare Advantage, have their benefits, including their prescription drug coverage, provided by private insurance companies approved by Medicare. As of February 2010, 9.9 million beneficiaries were enrolled in Medicare Advantage Plans, while 17.7 million were enrolled in stand-alone prescription drug plans. See Kaiser Family Foundation. Medicare Fact Sheet: The Medicare Prescription Drug Benefit. Available at: http://www.kff.org/medicare/upload/7044-11.pdf. Accessed 11 November 2010.

33 Centers for Medicare and Medicaid Services. Medicare & You, 2011.

34 Hargrave, Elizabeth, Jack Hoadley, and Katie Merrell. 2009. “Drugs on Specialty Tiers in Part D: Final Report.” Report to Medicare Payment Advisory Commission.

35 Avalere Health LLC. November 2010. “Initial Trend Analysis of 2011 Medicare Prescription Drug Plan Formularies.” Available at http://www.avalerehealth.net/news/archive/Avalere_Health_Analysis_of_2011_Part_D_Formularies.pdf. Accessed 6 January 2011.

36 Kaiser Family Foundation. Medicare Part D 2009 Data Spotlight: Specialty Tiers. Available at: http://www.kff.org/medicare/upload/7919.pdf. Accessed 18 November 2010.

37 Hargrave, Elizabeth, Jack Hoadley, and Katie Merrell. 2009. “Drugs on Specialty Tiers in Part D: Final Report.” Report to Medicare Payment Advisory Commission.

38 Gustafsson, Lovisa. “Part D Plans and Specialty Products.” 27 June 2006. Avalere Health LLC. Available at: http://www.ehcca.com/presentations/medicareaudio20060627/gustafsson.pdf. Accessed 6 January 2011.

39 Hargrave, Elizabeth, Jack Hoadley, and Katie Merrell. 2009. “Drugs on Specialty Tiers in Part D: Final Report.” Report to Medicare Payment Advisory Commission.

40 Karaca-Mandic, Pinar, Geoffrey F. Joyce, Dana P. Goldman, and Marianne Laouri. 2010. “Cost Sharing, Family Health Care Burden, and the Use of Specialty Drugs for Rheumatoid Arthritis.” Health Services Research 45(5): 1227-1250.

41 Hargrave, Elizabeth, Jack Hoadley, and Katie Merrell. 2009. “Drugs on Specialty Tiers in Part D: Final Report.” Report to Medicare Payment Advisory Commission.

42 Walsh, Bill. 9 March 2009. “The Tier 4 Phenomenon: Shifting the High Cost of Drugs to Consumers.” AARP Strategic Analysis & Intelligence (SAI) Briefing Report.

43 Hargrave, Elizabeth, Jack Hoadley, and Katie Merrell. 2009. “Drugs on Specialty Tiers in Part D: Final Report.” Report to Medicare Payment Advisory Commission.

44 Most plans require beneficiaries to pay a monthly premium and some also require the beneficiary to pay a deductible before the plan begins to contribute to the drug costs. ”Enhanced” plans may charge a higher monthly premium while waiving the deductible. See Riley, Gerald F., Jesse M. Levy, and Melissa A. Montgomery. 2009. “Adverse Selection in the Medicare Prescription Drug Program.” Health Affairs 28(6): 1826-1837.

45 Part D plan providers have two options for structuring plan benefits. Plan providers may offer either the standard benefit or its actuarial equivalent. Enrollees in plans that use the standard benefit must pay 25 percent of the cost of their prescription drugs. In practice, only a small percent of Part D plans offer the standard benefit, as most choose to offer an actuarial equivalent, typically using tiered cost sharing. See Kaiser Family Foundation. Medicare Fact Sheet: The Medicare Prescription Drug Benefit. Available at: http://www.kff.org/medicare/upload/7044-11.pdf. Accessed 11 November 2010.

46 The share of Part D PDPs charging coinsurance for non-specialty brand tiers has been increasing, and in 2010, a sizeable number of plans charged coinsurance for preferred brands (25 percent of PDPs) and non-preferred brands (34 percent of PDPs). See Kaiser Family Foundation. Medicare Part D 2010 Data Spotlight: Benefit Design and Cost Sharing. Available at: http://www.kff.org/medicare/upload/8033.pdf. Accessed 28 July 2011.

47 Kaiser Family Foundation. Medicare Part D 2009 Data Spotlight: Specialty Tiers. Available at: http://www.kff.org/medicare/upload/7919.pdf. Accessed 18 November 2010.

48 Kaiser Family Foundation. Medicare Part D 2010 Data Spotlight: Benefit Design and Cost Sharing. Available at: http://www.kff.org/medicare/upload/8033.pdf. Accessed 28 July 2011.

49 Whether beneficiaries actually undertake such research when choosing their Part D plans is another issue; some studies suggest that many seniors do not. See, for example, Hibbard, J, Greene J, Tusler M. An assessment of beneficiary knowledge of Medicare coverage options and the prescription drug benefit. 2006. Available at http://assets.aarp.org/rgcenter/health/2006_12_medicare.pdf. Accessed 27 July 2011.

50 “The Knowledge Networks Experience.” 2010. Retrieved 30 December 2010. http://www.knowledgenetworks.com/knexperience/index.html.

51 The survey was conducted using the web-enabled KnowledgePanel®, a probability-based panel designed to be representative of the US population. Initially, participants are chosen scientifically by a random selection of telephone numbers and residential addresses. Persons in selected households are then invited by telephone or by mail to participate in the web-enabled KnowledgePanel®. For those who agree to participate, but do not already have Internet access, Knowledge Networks provides at no cost a laptop and ISP connection. People who already have computers and Internet service are permitted to participate using their own equipment. Panelists then receive unique log-in information for accessing surveys online, and then are sent emails throughout each month inviting them to participate in research. More technical information is available at http://www.knowledgenetworks.com/ganp/reviewer-info.html.

52 Knowledge Networks. 2010. “KnowledgePanel Design Summary.” Available at: http://www.knowledgenetworks.com/knpanel/docs/KnowledgePanel%28R%29-Design-Summary-Description.pdf. Accessed 22 June 2011.

53 In calculating the average survey length, we excluded interviews that were listed as lasting more than 60 minutes.

54 In other words, we eliminated respondents who reported that they were enrolled in a Medicare Advantage plan, were dual-eligible (i.e., qualified for both Medicare and Medicaid), or received a low-income subsidy. We also disqualified anyone who did not know the answer to any of these questions.

55 The percentage reported here is unweighted.

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56 Kaiser Family Foundation. Medicare Part D 2010 Data Spotlight: Coverage of Top Brand-Name and Specialty Drugs. Available at: http://www.kff.org/medicare/upload/8095.pdf. Accessed 11 November 2010.

57 Given that the vast majority of plans use tiers, it is likely that some of the 123 respondents who reported that their plan does not use tiers were mistaken.

58 Results presented in this section are unweighted.

59 Many respondents were also wrong about Flonase due to the fact that relatively few plans included this drug on its formulary.

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