Where Have All the Activists Gone? And, Why We Need Them Back

At a time when we celebrate advances in HIV therapeutics and nearly miraculous cures for HCV, I wonder why there are so few activists at the party. One reason, of course, is that many did not make it to see the day of one-pill wonders. Yet, a decade into the HAART era there has been an opportunity for a new generation of advocates to fill the large shoes of their predecessors.

To be clear, there are countless hard-working individuals across the country fighting for those living with HIV. However, only a small fraction would consider themselves card-carrying AIDS activists of the likes of Bob Rafsky, whose heckling of then presidential candidate Bill Clinton called attention to the desperation of people living with HIV at a time when AIDS was a leading killer of young people and therapies were few, ineffective, and toxic.

My friend, Jules Levin of the National AIDS Treatment Advocacy Project (NATAP), is a stand out. His voice is heard not only in the offices of decision-makers at the NIH and FDA but also at scientific conferences, where he uses any available microphone as a pulpit to preach his brand of advocacy. Who else does this? Jules also takes the ‘Knowledge=Power’ mantra almost to an extreme, collecting and disseminating clinically relevant data at a maddening volume and in doing so creating an enduring, free, and now unique web-based library of information. It is not despite, but because of the dizzying successes of the HIV and HCV treatment/cure machine that need more Jules Levins and here is why.

 

Activists help assure equality of access to HIV care

HIV-infected persons have enjoyed a special status with many receiving HIV medications at no or low cost through government funded AIDS Drug Assistance Programs (ADAPs) or pharmaceutical programs that cover costs or co-pays for those most in need. Few diseases have such mechanisms to support affordable access to treatment - then again, few other conditions are fatal communicable infections. Today, access to HIV medications is threatened.  

The periodic faltering of state ADAPs over the past several years is a harbinger of serious challenges to maintaining these programs. In NC, our new governor asked for and received an $8 million cut in the state ADAP program, a substantial reduction that will likely not be made up completely by federal funds given the budget cuts known as sequestration. If ADAPs dry up and federal funding cannot step up, especially in states that have refused to expand Medicaid as part of the Affordable Care Act, waitlists will return. (It is notable that all the states in the South have chosen to not expand Medicaid and that HIV prevalence is highest in the our region, compared to all the others.)

In the 1980s activists demanded effective medications be developed to keep people from dying of AIDS.  Today, we need activists to be just as vocal and visible in demanding that life-saving HIV medications continue to be accessible to keep people alive.

 

Activists keep Pharma honest

I have met a number of people who work for pharmaceutical companies who are deeply dedicated to creating better treatment and cures for HIV. The provision of ART to the developing world is particularly laudable and the continued development of innovative HIV medications speaks to commitment of some companies to being part of the end of the epidemic. However, with successes come new responsibilities and pharma will not always do the right thing. Abbott’s decision to charge over $8.00 per tablet of Norvir to protect Kaletra’s market share is not ancient history. We need activists to be the conscience of an industry that plays such an important role in the lives of millions of people.

For example, the HCV treatment revolution is a remarkable boon for the millions of people living with HCV, but also is leading to a feeding frenzy for the billions of dollars to be gained by those who make HCV drugs. Activists need to be at the table to serve as a counterforce to excessive profit reaping. Mind you, I have no problem at all with industry recouping its costs of development/acquisition of incredible new medications, and with being rewarded financially – even handsomely. But, gouging is not acceptable. 

Activists can make it loud and clear that HCV cures should be fairly priced and available to all, not just the very poor and the very insured. They can advocate for a model of HCV pharma support that emulates HIV programs and help lawmakers, especially those in the government shrinking business, that the cost of hepatocellular carcinoma and the end of life spiral of liver failure is far greater than the expense of the provision of treatment for those in need. There is power to be unleashed (that is what the U in ACT UP stands for) with 5 million people in the US living with HCV plus their families and friends all ready to energized.

ACT-UP
ACT UP demonstrators shut down the FDA, October 11, 1988

 

Activists drive innovation

The power of activism to lead change has recently become more personal for me. My young son was recently diagnosed with Crohn’s Disease. When we faced treatment decision-making I was astounded to learn that the menu of options ranged from the old and fairly toxic to the new and fairly toxic. Further, very few comparative clinical trials of the limited choices had been conducted in children and no comprehensive treatment guidelines for this condition exists.

The experience brought into focus the role that HIV activists have played in insisting that antiretrovirals be developed, improved and used appropriately by clinicians. Channeling Jules Levin, I have joined an IBD pediatric quality improvement network and am pushing for experts in the field to help create standards for the treatment of pediatric IBD and am gearing up to push pharmaceutical companies to examine their compounds in kids.

I have come to realize that drug makers supply drugs to meet demand and that demand need not be only quantitative (lots of people), but can be qualitative (lots of urgency, dare I say, noise). Activists help industry to know what people living with HIV and/or HCV want and how to meet these needs.  That is innovation and that has led to one-pill-a-day regimens for HIV and is leading to clinical trials that focus on women, who have been neglected in many of the most recent pivotal HIV treatment trials. Absent such input, we get what researchers and clinicians think patients want.

Hearing from those most affected by the epidemic is also key when it comes to prevention. An article last week in the New York Times described a frustrating dearth of programs addressing HIV prevention among young men of color who have sex with men, even though these are the people now most likely to become infected with HIV. The article relied heavily on quotes from folks at the New York-based Gay Men’s Health Crisis, a longstanding and invaluable community based service organization, in calling for more to be done. The article did not highlight what advocacy has been waged for prevention in this population. Clearly, there have been voices for increased action but, I wondered was it loud or forceful enough?

We cannot and should not rely on the experts and policy makers to make the right decisions and set the right priorities. And, when stagnation sets in and the status quo is not enough, people must act. Die-ins and protest marches are not the tool to be used to fix everything, but maybe are what it takes when quieter and more reasonable approaches don’t produce.

 

In short, I miss the old activists. They challenged us to do better, and we did, if only to tell them we did so. They complained when business as usual was unacceptable and so we changed the business of how life-savings medications were tested and approved. Importantly, they infused our work with a purpose and urgency that has been diminished, despite the continued spread of HIV and HCV. Calling all smart loudmouths: your soapboxes are waiting. We need you, now, just as we needed you then.