Decoding Health Care
Part 24: Patient Advocacy Groups
Patient advocacy groups are part of the fabric of cancer care in America. As an oncologist I have always felt I should support them. When I was in practice that meant dragging my kids out of bed on a weekend morning to participate in the American Cancer Society Making Strides walk or the Susan Komen Race for the Cure. I also tried to attend as many ACS galas as I could. I served on the board of the local breast cancer advocacy group, To Life. And whenever I was asked I gave talks on various cancer topics at the local ACS Hope Lodge. I supported with money and time.
When I went to Aetna, I felt that the relationship of advocacy groups with the health plans was all too often adversarial. I convinced Aetna to provide funds to support several roundtables attended by health plan leaders (involved in cancer care) and large national advocacy groups. And again, I participated as best possible in advocacy group sponsored meetings.
And after I left Aetna I continued to stay connected with advocacy organizations. I have served in an advisory capacity to the Cancer Support Community and National Coalition of Cancer Survivorship. And I am proud to be a member of the board of Lungevity, the nation’s largest advocacy group devoted to lung cancer.
Advocacy groups do a lot of different things. If you have seen one advocacy group, you’ve seen one advocacy group. Different groups have different primary focuses. Some groups address an individual disease, some are more “general”, some are local, and some are national. But they have some things in common. There are hundreds if not thousands of such groups (https://www.nccn.org/patientresources/patient-resources/resources-for-patients-caregivers/advocacy-and-support-groups). For the purposes of discussion, I have broken down their activities into four areas: patient support, education, research, and public policy.
The American Cancer Society (ACS) is a prototypical patient advocacy organization (https://www.cancer.org/about-us/who-we-are/our-history.html). The ACS was founded in NYC in 1913 by 10 physicians and 5 laypeople with a primary goal of educating the public about cancer. In 1946, supported by $4 million raised by the well-known philanthropist Mary Lasker, the ACS launched its research program. In 1970, Margot Freudenberg, a leader in the Charleston, SC business community and ACS volunteer, launched the ACS Hope Lodge program (https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html). She got the idea from seeing similar facilities while traveling with Dwight Eisenhower in Australia and New Zealand on a People to People Ambassador program which was designed by Ike to improve international understanding and collaboration. Hope Lodges offer free housing to patients living more than 40 miles from their treatment facility. There are over 30 locations; for example, Hope Lodge in NYC is on 32nd street in Midtown Manhattan and has 60 guest rooms. Lodging is free. This is an awesome program.
The ACS has always been interested in policy. When President Nixon launched the “war on cancer” in 1971, the ACS was a vocal advocate. They were instrumental in expanding programs and funding at the National Cancer Institute in the 1970’s. And they have always been strong proponents of cancer screening and early diagnosis. But because of their status as a nonprofit, their ability to really influence cancer policy has been constrained (there is a limit on how much non-profits can lobby). They addressed this by establishing the American Cancer Society Cancer Action Network (ACS CAN) in 2001. This allowed them to more aggressively pursue an advocacy agenda including lobbying.
The ACS is a huge organization. Their revenue exceeded 650 million dollars in 2023. Ninety-nine percent came from donations. Of their expenditures, about half went to patient support and a quarter to research. ACS is very, very good at raising money. In many cities, ACS events like Making Strides (the ACS sponsored walk held every fall) and other social events are a huge deal that attract thousands of participants. They have a very recognizable brand that is respected and trusted.
There are few other advocacy organizations as big and as influential as the ACS. In many cases, the organizations choose to focus on one or two key competencies.
Lungevity, the patient advocacy organization of which I am on the board, has really focused on research and education. The research support has mostly been for junior investigators just starting a career in lung cancer research. These young investigators may find getting research funding from the NIH challenging. Launching these careers is really important work.
When I speak of the “educational” mission, I include providing educational resources to patients as well as physicians about lung cancer. Lungevity sponsors a number of patient focused events at which lung cancer experts talk about what’s new in lung cancer. To some extent, these programs also provide a critical patient support function, fostering a community of cancer patients and their caregivers. These communities provide emotional support, lessen fear and offer hope. Recently, Lungevity has become very focused on early diagnosis by lung cancer screening, a vastly underutilized but highly effective tool in reducing lung cancer mortality.
Building a community of patients with cancer and their caregivers has always been the mission of the Cancer Support Community (CSC). The CSC started out as Gilda’s Club. Gilda’s Club was founded in 1995 in memory of Gilda Radner, the famed comedian and alumnus of Saturday Night Live. Gilda died of ovarian cancer at age 42. Gilda’s Club was founded by Joana Bull (Gilda’s psychotherapist), Gilda’s husband Gene Wilder and Joel Siegel, TV film critic, journalist and colon cancer activist. It was designed to be a safe place to get emotional and social support, as well as a place to get information on cancer through lectures and workshops. It started out in NYC, ultimately growing to over 20 sites. In 2009, it merged with another cancer advocacy group, The Wellness Community, to form the Cancer Support Community. Gilda’s Club is an example of an advocacy organization that is focused on education and especially patient support.
I literally could go on and on about any of a number of patient advocacy organizations and their primary missions. But I would like to focus on two that are really laser focused on supporting individual patients. CancerCare is a New York based advocacy group that delivers individual counseling services to patients and their caregivers (cancercare.org). The counseling might involve “navigation” services, providing advice on available financial resources, or it might be psychological and emotional counseling. The services are free of charge and are delivered by licensed social workers. It might be delivered one on one or in a support group setting. CancerCare also provides educational material. CancerCare is really an amazing organization.
A second organization worthy of kudos is the Patient Advocate Foundation (PAF). The PAF is Washington D.C. based but offers financial support to patients throughout the United States (patientadvocate.org). The PAF does this by helping patients with the costs of cancer care. This might involve helping patients obtain access to compassionate drug programs, by providing co-pay assistance or providing financial grants to help ease the financial burden associated with cancer treatment. This includes everything from medical bills to transportation and childcare costs. The PAF maintains a national financial resource directory which can help identify local resources to unburden patients. It fills an important need for Medicare patients who cannot avail themselves of pharmaceutical company patient assistance programs, by awarding unrestricted financial grants to offset expenses. They really do God’s work.
It should be clear by now that I am a big fan of patient advocacy organizations. But they are not perfect. Over the last several years several controversies have arisen. For one thing, the bigger organizations have been criticized for the amount of money that actually trickles down to patients. Susan Komen got into hot water several years ago for the salary and benefits of their CEO, and the American Cancer Society has come under similar scrutiny. They are all sensitized to this now, and so it doesn’t seem to be as big an issue.
The non-profit world is very competitive. Funding is tight and branding is important. This has led to some questionable behavior. The Susan Komen foundation fundraising event is the Race for the Cure. They guard that “race for the cure” brand closely and have sued other organizations for trying to use that phrase. The (over)use of the pink ribbon, called pinkwashing, to sell products by suggesting some relationship to a breast cancer advocacy cause has been a practice of a number of organizations (again, Susan Komen has been implicated).
But these are really fairly minor infractions compared to what I consider to be a major conflict of interest that many patient advocacy organizations flirt with. As I mentioned, being a nonprofit is difficult and raising money is tough. Lots of the money comes from individuals. But as just about everyone knows, the deepest pockets are in the pharmaceutical and other life science companies. They all spend a lot of money on funding patient advocacy organizations. And they don’t do it out of the goodness of their hearts (at least not always). This creates a potential moral hazard for advocacy organizations.
The most blatant (and arguably the most ridiculously stupid) unethical behavior was uncovered and prosecuted in 2019. Two companies admitted they provided funds to patient advocacy assistance programs specifically (and exclusively) directed to patients receiving their drugs (https://www.justice.gov/opa/pr/two-pharmaceutical-companies-agree-pay-total-nearly-125-million-resolve-allegations-they-paid). In other words, the advocacy foundation utilization of this patient assistance was restricted by companies to circumstances where the pharmaceutical company might benefit. For Medicare patients this is illegal as it is felt to represent an inducement to prescribe. This isn’t rocket science. This is a well-known law. But the pharmaceutical companies tried to “launder” the funds nonetheless, and were fined $125 million.
There is a far more insidious mechanism by which pharmaceutical (and other life science) companies try to influence patient advocacy groups. Pharmaceutical companies make donations to “support” advocacy groups. Although it might not be particularly easy to find out who is contributing to whom, there is a lot of money changing hands. According to a report from Public Citizen (Mapping the PhRMA Grant Universe - Public Citizen), 13 of the largest patient advocacy groups received over $10 million dollars each, with a total of $266 million over a 12 year period. So what does this money buy?
It is difficult to answer this definitively. However, if one examines the public policy advocacy activity of some of the largest and most influential advocacy organizations it is hard to avoid the conclusion that these dollars provide at the minimum access and perhaps influence. I’ll focus on two examples.
The first is the Inflation Reduction Act (IRA). The IRA was an attempt by the government to reign in drug costs. Among other things, it instituted mandatory drug negotiations for the drugs which Medicare spent the most money on. Without rehashing the details (which can be found in my earlier Decoding Health Care post), the pharmaceutical industry was violently opposed. They attempted to block implementation in the courts (which failed). But they also tried to sow fear by claiming that by reducing corporate profitability they would be forced to limit research and development. The Congressional Budget Office (CBO) estimated that the reduced research investment might result in one less drug coming to market over the next 10 years (and a total of thirteen over the next 30 years, CBO Letter IRA Drug Development), . Of course Pharma did their own analysis which put that number much higher. The underlying premise is that rather than take a hit on corporate profits, industry will spend less on drug discovery. Heaven forbid they reduce their profits.
Curiously, many patient advocacy groups took strong stands against the IRA. This is despite the fact that reducing drug costs benefits all Americans, and that drug costs are incredibly onerous to cancer patients. Presumably they were convinced that the risk to new drug development outweighed the financial benefits to patients. It is a curious stance for advocacy groups.
A more recent example is the use of multi cancer early detection tests (MCED). I discussed these at length in my review of cancer screening (in Decoding Health Care post 18). To be kind, the evidence that these tests are going to improve health outcomes is sparse. Even so, the testing industry has pushed hard to get these paid for by health plans and especially the government. In fact, at the end of last year’s congressional session, a bill was introduced to mandate Medicare coverage. This bill didn’t go far; it was theorized that the CBO put an astronomical price tag on the program so the bill died.
Again, the industry has garnered the favor of many of the largest advocacy organizations to get behind this technology. It should not surprise anyone that the companies behind these tests donate a lot of money to several advocacy organizations. Now it is true that screening and early diagnosis have long been the mantra of the American Cancer Society (among others). But these tests are of unproven benefit. The UK is doing a large national study and the US is about to launch one as well. Isn’t advocating a policy that makes this a standard a bit premature?
To be fair, I have no direct knowledge of inappropriate influence. But one must concede this is a really bad look. People (including me) trust advocacy organizations. It’s not good for them to be associated with this sort of tawdry influence peddling. And the problem is that a lot of people know about these conflicts of interest, and so they have tarnished advocacy groups’ reputation.
So what is there to do? The National Comprehensive Cancer Center Network (NCCN) certainly receives funding from the pharmaceutical industry. But to their credit they have always had a robust firewall between industry and their guidelines committee. This might be viewed as a gold standard for defining what is appropriate behavior and what is not.
Of course the risk is that the dollars from industry will just dry up. Perhaps a less draconian approach would be for advocacy groups to recuse themselves from policy issues that impact their corporate donors. Or to restrict discussion to a totally insulated expert policy group that cannot be approached by industry. In any event, this is a problem that requires attention.
When I started writing this post, I considered distinguishing between patient advocacy groups and patient support groups but ultimately decided not to separate them. At the end of the day, all advocacy groups exist primarily to support patients. To me they enjoy the greatest success when the benefit to patients is most direct, whether that be education or financial or psychosocial support. It’s not that policy is not important, it’s just that it can be a slippery slope given how advocacy groups are funded.
So that leaves research funding. I believe advocacy groups do best when they support young investigators. But that is certainly not a universal sentiment. Recently, a breast cancer support group touted (in a full-page ad in the NY Times) all the investigators they support. The list included (at least) one Nobel laureate, (at least) one near Nobel laureate, and many senior investigators at high profile institutions. Those folks don’t need research money from advocacy organizations. But it’s an impressive list, likely to get the attention of potential donors.
Why do we need non-profit advocacy organizations to fund research at all? In my next post I will explore research funding and address the uncomfortable question of whether the current NCI/NIH funding paradigm has hampered our efforts to cure cancer.