Drug prices: Problems in funding patient advocacy groups

New York Times, March 1: 

More Than 80 Percent of Patient Groups Accept Drug Industry Funds, Study Shows

"Nearly 'nine out of every 10 are taking money,' said Dr. Ezekiel J. Emanuel, an oncologist and vice provost at the University of Pennsylvania. He is one of the authors of the study, which looked at the top 104 nonprofit patient advocacy groups that reported more than $7.5 million in annual revenues for 2014. 'I think that is not well known — I think that is a shock.'"

Comment: If we want to build social capital that can help get abusive healthcare prices under control, it's not enough to say that most patient advocacy groups are bad. I've been involved in patient advocacy for 3 decades, and it's very difficult to get other  funding. People want to do advocacy, but for a serious commitment almost everyone needs at least a stipend to live on, and minimal computer etc. expenses. (Even the original Emanual article in the New England Journal of Medicine is behind a paywall - starting at $20 for 24-hour access, and you have to register just to see that price.)

Foundations are reluctant because they don't know the medical area, many won't consider individuals or new organizations, and most require 501(c)3 status, which doesn't allow much advocacy. Governments cannot help advocacy, of course. Individual donors will need to step up and help create new organizations to handle this.

Note: ACT UP Philadelphia is an all-volunteers organization that does not accept any drug company funding. Funding is difficult, but possible because this organization has been active for 30 years. We cannot build a whole movement that way.


ACT UP testimony on housing needs of people with HIV in Philadelphia

Testimony by Max Ray-Riek
Member, ACT UP Philadelphia

Philadelphia is completing its first HOPWA needs assessment in 20 years. The quantitative portion of the assessment is not complete, but the qualitative portion has been released, and points to some very important themes that will be crucial to get right if we want to fight the many epidemics threatening Philadelphia’s public health, including HIV but also homelessness, drug and alcohol addiction, and mental illness.

In order to move forward, we need to build on the needs assessment to craft a comprehensive, city-wide plan for improving the public health of Philadelphia through ending homelessness, and the HOPWA needs assessment provides some clear next steps.

Solution Step 1: We need to coordinate care and services across multiple city departments and private agencies, through a centralized housing case management service. This needs to include centralizing data and maintaining a single master wait list in which people are automatically applied to any program for which they are eligible.

Federal best practices strongly recommend the housing hub model I am describing, but Philadelphia has challenges to overcome to get there.