Where should the money go???

[Mary]

As a cancer patient or survivor, you will have many opportunities to encourage others to support cancer causes. I have these same opportunities at ABC Survivors, and you may have noticed that I only provide announcements about sarcoma-specific charities. I would like you to know why, because it might make a difference in your own charity decisions.

As you think about which cancer charity to support, remember that sarcoma is a rare cancer, and bone cancers comprise less than 1% of all cancers diagnosed annually. So you can imagine that when money is raised for general cancer research, about 99% of that money will go to the more common cancers. Plus, because the more common cancers affect SO MANY people, there is extra pressure to find treatments and cures for those cancers. The researchers and pharmaceutical companies that develop new treatments for common cancers will profit more (a lot more) than those developing new treatments for bone cancer. Unfortunately, cancer treatment is about money, just like everything else in the world.

Next, considering that many people are dying from sarcoma right now, How much of the money that you donate do you want to go to potentially life-saving research and patient assistance? What is an acceptable percentage to you? Here are a few current examples:

Sarcoma Charities That Support Patients at the International or National Level

• The Liddy Shriver Sarcoma Initiative used 100% of donations in 2007 for peer-reviewed sarcoma research grants and for sarcoma patient assistance internationally. Most years they have 2-5% overhead. (see this page). They also ensure that their grants go to actual research, not overhead costs. Their funds go through an organization called FJC. Charity Navigator Rating: Four Stars

• Sarcoma Foundation of America used 39% of 2008 expenditures for sarcoma program expenses, which include research grants at several hospitals in the United States. For more information, see this report.

Sarcoma Charities That Support Patients and Research at the Local Level

• BeatSarcoma's Website states that they use 100% of donations for sarcoma research at Stanford in California. See this page.

• The Jennifer Hunter Yates Sarcoma Foundation gave 92.5% of 2006 donations to Massachusetts General Hospital for sarcoma research and sarcoma-related events in Massachusetts. See this page.

General Cancer Charities

• The Terry Fox Foundation gives 87% of donations to general cancer research run by the National Cancer Institute of Canada. See this page. One would assume that the National Cancer Institute of Canada also has overhead costs that will come out of that 87%.

• The Lance Armstrong Foundation used at least 32% of their 2007 expenditures for general cancer research grants in the United States. They used 15% of expenses for salaries and benefits and a good deal more on overhead (use the Adobe toolbar to go to page 24 of their 2007 Financial Statements). 2009 Charity Navigator Rating: Three Stars, Overall Efficiency Rating: 1 star

• The American Cancer Society (they run Relay for Life) used 11% of its 2008 expenditures for general cancer research awards and grants in the United States (use the adobe tool bar to go to page 7 of their 2008 Financial Statements). They used a whopping 57% of expenditures toward salaries, personnel benefits, payroll taxes, and professional fees. 2009 Charity Navigator Rating: Three Stars, Overall Efficiency Rating: 1 star

If you're wondering where the rest of the money goes in the larger charities, they have a number of paid staff workers; they spend donations on the cost of printing materials, telephone bills, worker benefits, marketing, management, etc; and they use funds for general cancer education and general cancer prevention. Because sarcoma is not preventable, and because there are better sources of sarcoma-specific education, money used for these purposes does little to help sarcoma patients.

Even some charities that are run in honor of sarcoma patients do not donate money to sarcoma-specific research, but to general cancer research instead. I remember last year while our team was biking for sarcoma research in Denmark, there was an osteosacoma survivor getting tons of press for biking across Canada. It turns out all of the money he was raising was going toward neuroblastoma research. Of course, that's great for neuroblastoma patients!

The point is - if you want to make a difference, know what difference you're making.

[Mary]

Why support sarcoma-specific research?

• Because most cancer charities give a small portion of their proceeds to research, and of that research, very little is about sarcoma. To learn more, read the message above this one.
• Because other cancers have millions of dollars in research funding, both public and private, and sarcoma has virtually none. I am not exaggerating.
• Because sarcoma tends to strike the young and healthy, people who can potentially make a full recovery if they can get better treatments.
• Because many sarcoma patients do not make a full recovery, due to the aggressive nature of the cancer and the available treatments. Many young sarcoma patients, if they survive, deal with disabilities, infertility, and medical challenges for the rest of their lives.
• Because, despite the fact that the number of cancer deaths have decreased in recent years, the number of deaths among adolescents and young adults is at a stand-still. This discouraging news is due, in large part, to the fact that young people deal with aggressive cancers like sarcoma that are not researched as much as more "popular" cancers.

What sarcoma-specific charities give all of their proceeds to research?

If you have a favorite charity in mind, ask to see their annual report! Or send an e-mail asking the types of things that they fund. There are several small, local sarcoma charities that fund sarcoma research in specific hospitals. This allows you to support the hospital that you like, but it may not mean that the funds go to the most promising research in the country (or the world). This is why I personally support the Liddy Shriver Sarcoma Initiative - because they only fund the best peer-reviewed research grants that they receive, from all over the United States. They also work with charities around the world to help with sarcoma research in other countries.

How is the research money used?

Some charities give money to one researcher or hospital. The monies can then be used however that researcher sees fit. Unless specified, the monies can be used for overhead expenses of the institution.

Few charities choose to require that research monies be used on peer-reviewed grants.  Peer reviewing gives a researcher the benefit of other top researchers' ideas and feedback, leading to stronger research projects. Peer-reviewing often "weeds out" projects that are flawed, redundant, or lack promise.

[Mary]

In 2008, the American Cancer Society spent a whopping 57% of its expenditures toward salaries, benefits, payroll taxes and professional fees. 11% of expenditures were used for cancer research grants, and the rest split up among various administrative expenses, patient support and prevention. (Use the adobe toolbar to skip to page  7 of their Financial Report) They get a ONE-STAR efficiency rating, but they get a 3-star overall Charity Navigator Rating, influenced by how financially stable they are because we all keep giving them money?

The Lance Armstrong Foundation's efficiency rating is sadly a ONE this year (the same as the ACS), and they also get a 3-star overall rating. Their CEO is now making $300,000 a year, getting close to the salary of the United States. But that doesn't top the ACS' CEO though - he brings in more than $600,000 a year, easily bypassing the salary of the president of the United States. The good thing about the Lance Armstrong  Foundation is that they continue to give much more money (32% of 2008 expenses) to actual cancer research than the ACS does (11% of 2008 expenses). The Lance Armstrong Foundation also focuses a lot of resources toward survivor support and education.

If you'd like a 4-star alternative, try viewing the list of top-rated cancer charities. Check the message at the top of this thread for updated numbers on sarcoma charities as well!