Leukemia and Lymphoma Society of Canada Responses to Star Questions

8/12/2019 Leukemia and Lymphoma Society of Canada Responses to Star Questions

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Home Office, Canada

804 2 Lansing Square, Toronto, ON M2J 4P8tel.416.661.9541 fax.416.661.7799

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diverse array of communication and marketing products and the professionalism with which we

have been served would not have been possible to replicate internally for anything close to the

expenditures made.

Nonetheless, as part of my review of areas where we can lower costs, where we can take

advantage of new technologies and models, I have been discussing ways to find further

efficiencies with all of our suppliers. This is consistent with our commitment to being good

stewards of the precious funds donors entrust to us.

One of the advantages of being a veteran of charitable management in a variety of settings is

that I can bring that lifetime of learning to this role. LLSC is a great organization doing invaluable

work across Canada, but we can and will get better on every metric that I can find to make

improvements.

Please find below detailed responses to some of your questions. I am sure that you will

understand that some of your queriesour relationships with researchers, for exampleare

not possible for us to respond to for reasons of privacy and or commercial confidentiality.

However, I hope you will find that the transparency and granularity of the information below

provides you with a clear and complete picture of the LLSC today.

Sincerely,

Shelagh Tippet-FagyasPresident, The Leukemia & Lymphoma Society of Canada


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Responses to Toronto Star Questions, May 5, 2014

The Leukemia & Lymphoma Society of Canada (LLSC), headquartered in Toronto, Ontario, isaffiliated with The Leukemia & Lymphoma Society (LLS), headquartered in White Plains, NY,

USA, as of July 1, 2004. LLSC and LLS fund research to advance innovative, life-saving therapies;

support patients, caregivers and healthcare professionals through free blood cancer

information, education and support; and promote policies that help patients have access to

quality, affordable and coordinated care. LLSC and LLS touch patients through our 5 regional

offices across Canada and 56 chapters in the U.S. The shared mission of the two organizations is

to cure leukemia, lymphoma, Hodgkins disease and myeloma and improve the quality of life for

patients and their families.

To start off, could you please tell us, in as simple language as possible, how much of the

money raised by Canadian donors goes to the charitys good works? Following that, could youplease address the specific questions below?

Based on CRA data, the average fundraising cost ratio for the ten largest Canadian health

charities in 2013 was 41%. Our fundraising ratio as per our 2013 T3010 was 35%, with 57% going

to mission and 8% to administration costs. The CRA says that a fundraising ratio over 70% is a

cause for concern and we are far under that threshold.

We would like to know how much of those donor dollars goes to research. The LLSCs most

recent online T3010 states approximately $1.7 million was given to research. Your website

states more than $6 million was given to research in 2012. Could you please specify where the

$6 million comes from? Also, if it is $1.7 million given to research by the LLSC, that is about 11per cent of total dollars raised in Canada. Considering the stated primary mission of the

charity is to cure blood cancers, can you please explain this percentage?

The mission of LLSC is to: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and

improve the quality of life of patients and their families.Our strategy to achieve the mission is

based on three areas of focus: research, patient support and advocacy.

In 2013 we spent over $4.1 million on public education programs, over $2.8 million on patient

support and over $1.8 million on research. Largely because of our strong relationship with our

U.S. affiliate The Leukemia & Lymphoma Society (LLS), Canadian scientists were also able toattract over $4 million in international funding for a total research investment of over $6 million.

This reporting method for research investments is an industry standard that is endorsed by

watchdog organizations like Charity Intelligence.


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LLSC fosters the careers of aspiring blood cancer researchers by funding young scientists who

may have difficulty sourcing grant funding elsewhere, and innovative cutting-edge ideas in

need of seed funding. LLS often steps in with larger grants once ideas have blossomed with LLSC

funding, allowing scientists to take their blood cancer research to the next level.

Blood cancer research is working. Survival rates for many blood cancer patients have doubled,

tripled, and in some cases almost quadrupled, since the 1960s.

We would like to address the donation given to the LLSC by Beer Store employees who are

also members of the United Food and Commercial Workers Union. The website,

bottledrive.ca, states the employees, largely through the Beer Store Returns for Leukemia

bottle drive, raised approximately $1.7 million in 2013. As mentioned above, this is the same

amount the LLSC gave to research, according to the charitys T3010 as well as internaldocuments outlining 2013 numbers. Could you please explain this? This appears to be a flow

through donation. Please tell us what fundraising efforts your charity took to raise the

money and any costs you associated with a donation that could easily have been sent directly

to the research group?

We are very proud of our long-term partnership with the United Food & Commercial Workers

Canada and The Beer Store and the donations they collect are used towards mission programs.

The fact that the amount raised by the bottle drive is similar to the research program

investment is simply a coincidence.

We are under the impression that the UFCW has raised additional money for the charity.

Could you please provide us with the total amount raised by the union for the last severalyears, per year?

The total contribution from the UFCW in 2013, including the bottle drive, was $2.5 million.

Since we do not receive any government funding, we are extremely grateful for the

commitment and loyalty of the UFCW and The Beer Store employees, and the people who

support all of our fundraising efforts, including third party events supported by LLSC staff and

volunteers.

Could you please provide us with a list of researchers who have received grants from the LLSC

in the last several years, per year, and where they work?

LLSC provided operating grants to 24 scientists in 2013, located at 13 institutions across Canada.

In addition, we supported one project through the Therapy Acceleration Program, as well as

funding 11 medical students through summer studentships.

We would like to address a series of documents, attached to this email, which we have

obtained. Our understanding is that these are internal financial documents that were


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Public Education programs inform non-patients about blood cancers; ensures healthcare

professionals are up-to-speed on latest advances and the free support programs LLSC

provides to patients; and advocacy efforts focused on access to effective treatments and

diagnostics. For example:

Communication materials and online resources designed to inform the public about

blood cancers

Educational information sessions for healthcare professionals and non-patient

groups

Creation/distribution of community resource guides

Writing health articles & updates

Health exhibits at fairs, professional conferences, etc. For instance, LLSC exhibits at

the Canadian Association of Nurses in Oncology help ensure nurses are aware of

how LLSC can support their patient care efforts.

Participating and/or conducting health education training for staff and volunteers

Gathering data and reporting on relevant health issues and statistics on blood

cancers

Providing the patient voice to the oncology drug approval process

Patient Services represents activities performed or programs conducted for the purpose

of providing physical, emotional and other assistance to individuals who are affected by

a blood cancer. LLSC provides support to over 8,000 people each year. Support is

provided from diagnosis right through survivorship or bereavement. This includes: 15 Support Groups functioning across Canada

Trish Greene Back-to-School helps educators and parents ensure children have the

optimal back to school experience after cancer treatment

Over 300 First Connection matches where patients are connected one-to-one with a

highly-trained survivor for peer support

Patient education programs covering a wide spectrum of topics from disease-

specific (i.e. Understanding Leukemia) to coping mechanisms (i.e. strategies to help

with stress & anxiety) to research advances (i.e. The Future of CLL Treatment in

Canada) to survivorship issues (i.e. Dealing with Treatment-Related Infertility)

Providing one-on-one information & support to patients/caregivers Connecting patients to community resources so they have as much support as

possible through their cancer experience

Printed disease information dissemination to patients directly or through healthcare

organizations (hospitals, cancer centres and other non-profit organizations)

Determining gaps in service and planning on how to improve LLSC support for

patients/caregivers


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Referring to the document dealing with our offices, do you believe the rent costs are the

best and most efficient use of charity dollars? For example, one of the two Toronto offices

costs $13,021 per month for 11 employees. We have also been told that one of the two officesin Montreal was nicknamed the Taj Mahal because of its opulent decor. Woul d you be able

to provide us with a cost breakdown of how much money was spent outfitting the new

Montreal office on St. Maurice?

LLSC has eight physical offices across the country. To reduce costs the national office will be

combined with the Ontario Region office in northeast Toronto in 2014 resulting in cost savings.

LLSC closed the Ottawa office in January, 2014, with staff serving that geographic area now

working from home. As leases come to term, office space is evaluated to determine if the space

still meets organizational needs and is enabling LLSC to better help patients.

The office referred to in Montreal is a sub-lease that we were able to rent at a very competitiverate. The only modifications LLSC made to the office were painting and the purchase of some

basic furniture.

Referring to the document titled LLSC FY14 Budget v FY13 Actual Consolidated travel costs

are $270,251. Meeting costs, which we understand are things like hotels and food, are $347,

205. There appears to be about 70 employees with LLSC, making travel and meeting costs

$8,820 per person. Can you please explain this?

The document titled LLSC FY14 Budget v. FY13 Actual Consolidated is a planning document,

containing preliminary numbers that have not been released to the public. The Travel& Meeting

costs include all costs associated with the execution of the patient support component of LLSCsmission. Travel is essential to delivering patient support and education, as outlined in the LLSC

mission statement, in a country as geographically vast as Canada.

Regardless, the LLSC strives to be as efficient as possible. Significant review of travel in the first fiscal

quarter of this year has led to over $100,000 in savings. Meeting expenses have also been

significantly reduced in this fiscal year, to ensure more money can be applied to the LLSCs mission

programming.

We have spoken with several people who have knowledge of the inner workings of LLSC and

would like to address some of the issues they have raised. There is a clearly expressed

frustration at what is perceived to be a great deal of unnecessary travel costs. For example,

monthly meetings in the U.S., trips to scout events in New Orleans or Florida even though the

event would not be applicable to Canada, or a request to send staff and volunteers to New

York for a short meeting on how to train pregnant women who are participating in runs. Also,

a yearly conference in either Orlando or Washington which staff and volunteers attend. The

people we have spoken to also explained that travel across Canada and the U.S. for

conferences and meetings is not optional for staff. Can you please comment on this?


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We have in our possession a Design and Brand Consulting Services contract from Spin

Design, a company operating out of Milton, dated March 20, 2013 and signed by past

president Nancy Allen. This agreement supersedes a past agreement. The contract stipulatesSpin Design would be paid over $18,000 per month to dedicate up to 245 hours per month to

LLSC. What services were provided for this money? Did Spin Design regularly work 245 hours

per month? Would it not be more cost effective to hire someone internally to deal with design

considering this adds up to over $200,000 annually? Also, would this service be included in

professional fees. Referring again to internal document LLSC FY14 Budget v Fy13 Actual

Consolidated we see $2,077,549 spent on professional fees. Could you please explain what

services fall into this category?

SPIN Design entered into a confidential business contract with the LLSC and any discussion of

the details of the contract would be in violation of the spirit of the agreement. SPIN Design

serves as a multi-person marketing unit for the LLSC, providing products and counsel to assist inthe provision of services, beyond the LLSCs internal capabilities.

Choosing between purchasing services and developing internal capabilities is a challenge faced

by many charitable organizations and it is one that the LLSC will continue to review. National,

community-oriented organizations like the LLSC also require professional services such as

translation, online donation processing, website maintenance and accounting. The Professional

fees category of the LLSC FY14 Budget v FY13 Actual Consolidated planning document

includes fees for the services listed and others.

We would like to address the patient support side of your mission. Please describe thecharitable or good works your organization provides. Our understanding is that the backbone

of patient support services is five patient support positions. Is this correct? Could you please

explain their role and salary range? Has the charity shifted in recent years from hiring

coordinators that have more qualifications (for example, a Masters in social work) to hiring

those with fewer credentials for a community worker role? If true, do you think this impacted

services provided?

The LLSC provides a variety of support services to patients, through six staff across the country

and mission staff at the national office. When hiring patient outreach staff, the LLSC does not

mandate a particular background for candidates. The goal is to educate and empower patients

to make appropriate treatment decisions, connect patients to local community resources and

maximize the efforts of local volunteers. Service has not been impacted.

Additionally, Canadians affected by blood cancers can call a toll-free number to speak to an

information specialist about diagnosis, treatment and survivorship.

We would like to address the charitys model. One issue that was brought to our attention is

that the LLSC model may be outdated and that the focus on campaigns like marathons is

becoming increasingly difficult for charities to do well at. Also, that by the time LLSC entered


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this market in Canada it was already oversaturated by other long established charities. Could

you please comment on this? Specifically, is the charity looking at other models?

The LLSC has been taking steps to diversify revenue sources and ensure the LLSCs initiatives

address the distinct nature of the charitable giving in Canada.

Lastly, since your organization is so closely affiliated with the U.S. we would also like to

address privacy issues which often arise with cross-border collaborations. Has financial donor

data from Canadian patients and/or donors ever been store on U.S. servers in the U.S.? Could

you please explain M360 Canada?

LLSC is compliant with CRA guidelines regarding the storage of financial data. LLSC patient and donor

information is securely stored in Canada.

Documents

Leukemia and Lymphoma Society of Canada Responses to Star Questions