Patients with rare diseases can often feel isolated. A person with hemophilia, for example, might go years without meeting another person with the bleeding disorder. But thanks to patient advocacy groups — many of which are funded by drug companies with a drug to treat a certain disease or ones in development — these patients can feel part of a community.
I attended a great conference in Washington, DC, in June, organized by the folks at PharmedOut on how the pharmaceutical industry influences medical discourse. One panel discussion focused on pharma-funded advocacy groups.
Patients of rare diseases can often feel isolated. Phillip Kucab, a physician from Detroit who has hemophilia, talked about what it was like growing up in the hemophilia community.
“Hemophilia is incredibly rare. There are only about 20,000 people with it in the US. The patient organizations in the hemophilia community give us the opportunity to meet other people with hemophilia, share stories, and learn from one another.”
The patient organizations Dr. Kucab is referring to are part of a network of nearly 50 statewide non-profits and 3 national non-profits that provide education, programs, and services for people with hemophilia. These organizations are largely funded by pharma, which Dr. Kucab admits is controversial. However, he says, “without pharma funding, many of these organizations would not be able to survive and the programs and services they provide do world of good for people living with hemophilia.”
At their best, patient advocacy groups create supportive communities for their members to share best practices for dealing with the disease, spread information on the newest medical research and swap information on where to find the best doctors and programs. When members experience harsh side effects with medications, they can turn to the group for advice and suggestions.
Some of these groups find reasons to lobby their legislators in Washington and the FDA to educate the public about the disease, as well as encourage funding for research. These groups put the patient at the center and are more often found in organizations that don’t accept funding from pharmaceutical companies.
Taking Advantage of Patients?
Many people criticize pharma-funded disease organizations as taking advantage of patients who have few choices of organizations to advocate on their behalf. But it’s actually hard to find organizations that don’t take pharma money. At their worst, patient advocacy groups blindly accept the information fed to them from self-benefiting pharmaceutical organizations.
Patients often lobby for a drug — especially at FDA advisory committee meetings — on the hope, frequently against the lack of any evidence, that it might be the magic cure. Potential alternatives to the drug that the pharma company is promoting and trying to get approved by the FDA are blocked out and that information doesn’t get to the patients who need it.
Barbara Mintzes, PhD, a pharmaceutical researcher at the University of Sydney, highlighted some of the dangers of the pharmaceutical industry’s sponsoring groups at that same PharmedOut panel.
“There is a basic conflict of interest in pharma funding of patient advocacy group,” she said. “Too often, the information that these groups provide to members creates undue optimism about benefits of new drugs and tends to be silent about adverse events.”
Mintzes added that pharma companies often use patient advocacy groups to find “patients or parents of patients who will lobby intensely in the sponsor’s interest.” In these cases, “certain voices are amplified and others are not heard.”
Industry Funding Widespread in Advocacy Groups
Pharma funding is nearly ubiquitous in patient advocacy groups and it’s hard for many of these organizations to not accept that kind of funding. It’s hard to raise a lot of money from patients who are financially strapped because of their health condition.
Those that take funding can do a lot more for their members. Our sister organization, DES Action USA, staunchly refused to accept any money from industry because DES (diethylstilbestrol) was a drug and synthetic estrogen that was aggressively marketed by pharmaceutical companies and harmed pregnant women. Because of those financial limitations, the organization is dependent on member dues and donations.
So, how can you find the right patient support group for you?
Much depends on what you need and want. Are you interested in becoming part of a larger community by finding others like you and sharing experiences? Maybe you are seeking the latest information on research. Others will lobby and teach their members to lobby for more money for funding or health insurance coverage.
DES Action was founded more than 35 years ago to educate, identify, empower, and advocate for those 5 million women and their children and grandchildren who were exposed to DES from the 1940s through the 1970s.
Today, benefits that are most valued by members are the private chat room for DES Daughters and ongoing education for our members on DES research and effects, which are so hard to find out about. In the 1980s and 1990s, DES Action was very involved in lobbying and research. Patient advocacy organizations can evolve and respond to the needs of their members, without any undue influence from industry.