Much like the virus itself, AIDS activism has had to mutate to adapt to a changing environment. In the old days the good guys and the bad guys were easy to spot and the moral arguments impossible to ignore or refute, especially while your friends and exes were disappearing like the season finale credits of America's Next Top Model.
As more and better treatments became available, due in large part because of direct advocacy of the people affected, movingly illustrated in the Oscar-nominated documentary How To Survive a Plague, black and white quickly shifted to shades of grey.
Now, before I go any further, let me make it clear that I am speaking for myself, as a member of ACT UP, and not for the whole group. You'll understand my qualification at the end of the diary.
Improved treatment took the angry wind out the hand painted banner sails. You now see former HIV/AIDS activists assimilated into related non-profits or fields of research, places where challenging the status quo is a liability. Others moved on to fight for different causes, and then there are those who, having put the virus in the Undetectable box, chose to pursue personal priorities.
But just as AIDS isn't over, neither is the work that needs to be done. Access to the best available treatment is easy for those who can afford it, but without a compassionate world wide version of No AIDS Patient Left Behind, others suffer with inadequate care or none at all.
A partial list of other issues include regimen compliance; the effectiveness of safer sex campaigns in the face of a chronic vs. fatal condition; discrimination (including HIV criminalization); rising healthcare costs amidst shrinking healthcare budgets; long term drug side effects; dislocation and immigration; and others that don't neatly fit in a soundbite or sign. While some factors are no longer relevant for many, they continue to be obstacles for many more.
But no obstacle to Big Pharma profits- AIDS, inc. has ballooned into a healthy revenue stream, one that trickles down into fancy fundraising galas, glossy magazine ads, strategically placed underwriting and financial section buzz. A current this lucrative can afford to muddy the issues while diluting critical investigation.
When the splash gets in your eyes, it's not so easy for the good guys to call out the bad guys and clearly articulate what needs to change. Just as patients need new regimens against the drug-resistant virus, activists are formulating new targets, tactics and demands.
If calling Gilead an AIDS profiteer sounds harsh in these live longer times, just scratch the nacreous layers of patient assistance programs and patent pool negotiations, and you'll find a company that shut down a promising Hepatitis C trial to avoid sharing profits with a competitor, (and spent 11 billion to do so), reached 8.4 billion dollars in revenues last year, before posting its highest stock price in 20 years last month, and made its CEO among the highest paid.
But all is not rosy for Stribild, Gilead's newest product, which combines existing HIV meds with a new booster drug cobicistat. Ignoring pressure from lawmakers to reduce the $28,500 annual price tag, Gilead now finds that New York Medicaid has declined to cover Stribild.
The anger at Gilead goes beyond the United States. Simon Collins, of the UK based HIV i-base, writes that Stribild (referring to it by its former name Quad) has not shown itself a big improvement over existing regimens.
While Quad offers potential advantages in care, these were not demonstrated in the clinical trials that led to approval based on finding it is “not likely to be worse” than current treatment. Without demonstrable advantages, public health care providers, including the NHS, are likely to find it difficult to make a case for its routine use.Three of the drugs in Stribild are already available, and can be taken separately, along with an existing booster such as Norvir. Gilead is justifying the high cost by saying that it is using a new booster, and that all the drugs are in one pill. Not everyone is sold on the new booster. In addition to that "not likely to be worse" endorsement, Lynda Dee, of the Fair Pricing Coalition, warns of the potential for kidney side affects.
Thus, Dee and her colleagues suggest, “Stribild’s booster component cobicistat is more like excess baggage than an achievement worth $2,000 above the only other approved integrase inhibitor combination.” They add that there may also be a greater risk of kidney side effects with Stribild than with the Merck integrase inhibitor combination.A corporation with such an enviable stock performance for the last two years could surely take a deep breath and consider the (non-monetary) cost of being king of the pill. Collins offers sage advice for AIDS profiteers:
A more realistic model – and a long standing activist demand – is for new drugs to be comparable to existing options, and a company should benefit from increased profits based on widespread use of better medicines, not from excessive profits derived from a much smaller number of patients paying exorbitant prices. Health care should not be based on exclusive branding like cars or mobile phone technology. (emphasis mine)ACT UP San Francisco will be offering its own advise next Tuesday, December 18th, with a creative multi-site demonstration starting at noon, at the Harvey Milk Plaza, at the corner of Market and Castro. We hope to bring home to everyone the truth that AIDS is still with us, and that never should life saving medicine cost a life's savings.
Bay Area Kossacks, I invite you to join us on December 18th! ACT UP, Fight Back, Fight AIDS!
Update: after putting the finishing touches on this diary, I found out that Gilead has requested a meeting with ACT UP at an office in Redwood City. I take no credit for this.