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Greg Brozeit: History of Patient Advocacy in U.S.

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Greg Brozeit: History of Patient Advocacy in U.S.

Guest columnist, Greg Brozeit, is at it again. Put your thinking caps on. Greg shares more of his outside-the-box, global perspective with us today, this time focusing on patient advocacy:

A Short Political History of Patient Advocacy

Modern patient advocacy was born in the United States. In the beginning it was mostly political.

Brozeit headshotAlthough a handful of disease advocacy organizations emerged between the beginning of the 20th Century and the 1980s, few had a visible impact on the lives of regular people. Decision making about research and treatment rested primarily with physicians, academia, and their cloistered professional societies.

An early exception was Mary Lasker, a politically active socialite whose parlor room politicking in the 1950s and 60s was largely responsible for the creation of the National Cancer Institute (NCI) in 1971.

Arguably the most important change in the patient advocacy paradigm was the AIDS movement in the 1980s. AIDS activists amplified the voices of patients to pressure government, medical institutions, and industry to address scientific and clinical issues with a redefined, aggressive grassroots activism.

Taking a page from the AIDS experience, breast cancer advocates promoted sophisticated plans to pressure policy makers to pay attention to their issues. At a time when few would have defined a breast cancer diagnosis as anything more than an intimate, personal experience, it was now a political act of sorts.

In the early 1990s, arcane congressional budget rules limited funding increases for the National Institutes of Health (NIH). To overcome this, advocates successfully lobbied to create a breast cancer research program within the Department of Defense (DoD).

During the same period, the drug taxol was identified to be one of the most promising treatments for certain types of breast cancer. The drug was derived from the bark of the rare Pacific Yew tree, which grew mostly in the habitat of the endangered spotted owl. Working with broad, non-medical coalitions and Congress, breast cancer advocates carved out compromises allowing limited harvests to produce adequate supplies of taxol. After 1993, new sources of taxol were discovered that saved the Pacific Yews.

The experiences of the AIDS and breast cancer advocacy formed a template of sorts for other disease advocates. Educating communities to influence public officials could change regulatory policies like drug approval and increase investment in research and drug reimbursements.

The explosive expansion of the internet in the mid-to-late 1990s propelled a new advocacy movement. The language of patient education became less academic and, therefore, more politically accessible. Physicians, medical institutions, professional societies, and the medical device and pharmaceutical industries began to understand that patient advocates could be much more than consumers—they could be partners: partners to spread their messages and act as surrogates for the audiences they wanted to sway.

These partnerships led to more professionalism in cancer advocacy organizations representing almost the full spectrum of individual cancer types. One of the issues that united them all was support for increased funding for NCI, the largest NIH institute.

In the late 1990s, congressional champions for cancer issues sought ways to increase funding for NCI. But trying to rally the cancer advocacy community behind NCI and not the other institutes of NIH risked creating a cancer “silo” that might drive wedges between them and those representing other diseases and disabilities.

They decided a better idea would be to double funding of NIH over the five-year period of 1998-2003. A unified, consistent message would keep Washington from employing the “divide-and-ignore” silo tactics that many in Congress used as an excuse to not prioritize research funding.

After achieving the goal of doubling NIH funding in 2003, many of the coalitions continued to exist, but mostly on limited issues. The difference this time was that most of them had become more professionalized.

The policy emphasis now was on regulatory and reimbursement issues. Insurance coverage of oral drugs is the most prominent issue of this era. Individual advocacy groups focused on creating limited coalitions to carve out smaller programs.

Lobbying around passage and implementation of the Affordable Care Act created some ad hoc coalitions, but many advocacy organizations decided to lay low to avoid the ideological crossfire that dominated the debate. Unfortunately, the unity and consensus on big issues that defined the era of the NIH doubling has not been achieved since.

I think the reemergence of silos is one reason success in advocacy has suffered. Another is because most politicians neither fear nor benefit from the positions and votes they take on disease issues. When was the last time a politician either won or lost an election based on their views about medical research funding and related issues?

Consider, for example, how politicians are rewarded or punished for their stands on issues like guns, abortion, or taxes. When I recently lamented to a former staffer about the retirement of one of the greatest champions for medical research that no one has taken up the issue as he did, I was dumbfounded by the response, “Well, you know he never talked about that to his constituents back home.”

If our issues are to be taken seriously in the future, we have to make sure that policy makers talk and act seriously about them. We must make patient advocacy politically consequential.

Many of us are involved in patient advocacy at the micro level. For example, I’m always advocating for ongoing patient education; how important it is for us to take responsibility for our own care. And imploring healthcare professionals to remember that it isn’t just enough to keep us alive anymore. Now that so many myeloma patients are living longer, paying more attention to our overall quality of life (limiting peripheral neuropathy, for example) is almost as important.

One patient at a time, right? So it’s always interesting to me to get a glimpse of the bigger picture. A special thank you to Greg for doing that. Miss his previous column? It dovetails nicely with this one:

Is myeloma therapy best in U.S.?


Next week Greg pulls this all together for us, bringing his thoughts about patient advocacy back from the theoretical to practical.

Feel good and keep smiling! Pat