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PhotobucketMuch 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!

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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.

Originally posted to Xavior Breff on Wed Dec 12, 2012 at 04:44 AM PST.

Also republished by HIV AIDS Action and Community Spotlight.

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Comment Preferences

  •  1:42am - time to get some much needed sleep (16+ / 0-)

    this story will continue to develop pending a possible meeting between ACT UP and Gilead... will the activists make headway where the lawmakers didn't?

    "we're flying high on affluenza, mounting severed servants heads on the credenza" -Sanctuary City of the Rich

    by Xavior Breff on Wed Dec 12, 2012 at 01:43:06 AM PST

  •  Thank you for posting this (8+ / 0-)

    and I give thanks each day for ACT-UP.

    Join us on the Black Kos front porch to review news and views written from a black pov—everyone is welcome.

    by Denise Oliver Velez on Wed Dec 12, 2012 at 05:14:28 AM PST

  •  If your complaint is that the cost of drugs... (2+ / 0-)
    Recommended by:
    suesue, joseph rainmound

    under patent is too high, then this reflects basically the entire Big Pharma operation, not just AIDS patients/advocates. Aside from targeted protests like the one you describe, there are few viable remedies. One is allowing federal payors (Medicare for now) to negotiate prices. Unfortunately, this could very well leave patient groups not represented in the Medicare pool out in the cold.  Another reason to favor more universal healthcare/single payor.
      If on the other hand, you are concerned that the drug is no more effective than existing drugs/combination therapies, then the problem is more likely to involve failure to follow evidence-based principles among providers.
      At any rate, thanks for bringing an important topic up for discussion. do we really want nothing but the "invisible hand of the marketplace" setting the price of life-saving meds? The "consumer" is always going to be making decisions at a disadvantage-- the system is definitely rigged.

    •  money and medicine (1+ / 0-)
      Recommended by:
      Denise Oliver Velez

      Medicare E (for anyone who wants it) would go a long way in helping turn healthcare into something other than privilege, provided drug prices could be negotiated.

      South Africa, India  and Brazil are getting better at replicating generics, and perhaps the Big Players are trying to position themselves for a softer landing by creating novel versions of regimens that are already doing very well, in the hopes that novelty or convenience can extend the gravy train.

      but really, I would love for the world to view worth and value based on other things besides an assigned cash value.

      "we're flying high on affluenza, mounting severed servants heads on the credenza" -Sanctuary City of the Rich

      by Xavior Breff on Wed Dec 12, 2012 at 10:36:08 AM PST

      [ Parent ]

    •  actually, there is a way to reduce drug prices, (2+ / 0-)

      that would be making it a price regulated industry, like many utilities. they are allowed a maximum level of profit. in return, they get an extended patent life on their drugs. i think (though i'm not an attorney) this could pass constitutional muster, as it would affect public health.

  •  Community Spotlight- thank you! (3+ / 0-)

    I am making some edits right now, the most important highlighting that while the FDA approved the new expensive combination drug, it has not approved half of its ingredients. how'd that happen?

    "we're flying high on affluenza, mounting severed servants heads on the credenza" -Sanctuary City of the Rich

    by Xavior Breff on Wed Dec 12, 2012 at 08:57:29 AM PST

  •  I'm pleased that people with AIDS (3+ / 0-)

    are living, on average, much longer these days than in the 1980s. But, as you point out, it's been a two-edged sword.

    One down-side that I see to newer pharmaceutical treatments for AIDS, is the fact that AIDS has largely been "taken off the burner" as far as the mass media goes.

    People not directly involved in AIDS some way, have basically forgotten all about it.

    It's here they got the range/ and the machinery for change/ and it's here they got the spiritual thirst. --Leonard Cohen

    by karmsy on Wed Dec 12, 2012 at 09:46:04 AM PST

  •  how, exactly, do they justify the high price tag (1+ / 0-)
    Recommended by:
    Denise Oliver Velez

    for these drugs, aside from the "we can charge whatever the hell we want, and you'll pay it, or die.", profit driven approach? the actual cost of producing almost all drugs, even the most expensive, is pretty low, on a per-unit basis. the R&D costs (assuming they even have any) are roughly only 50% cash-out-of-pocket, after taking tax savings into account, and they have a 17 year patent life, giving them a legal monopoly on production/sales. if you can't charge a reasonable price, and still make a healthy profit on a fairly widely used drug, the problem is with your management, not the cost of of the drug itself.

  •  HIV/AIDS the worst disease ever. (0+ / 0-)

    Even with treatment it is painful... Treatment is very expensive... The virus keeps mutating.

    "Early warnings suggested that HIV/AIDS deaths could reach 90 million, higher than the estimated 75 million that fell victim to the “black death” in the 14th century and the more than 50 million that died of the Spanish Flu as World War I ended. Now, thirty years into the crisis, AIDS has infected 60 million people and 27 million have died. Unfortunately, as treatment options have expanded, complacency about the disease has set-in resulting in a continuing spread of the virus."

    http://www.aidsresponseeffort.org/...

    Love Me, I'm a Liberal!

    by simplesiemon on Wed Dec 12, 2012 at 05:03:29 PM PST

  •  As a long term survivor, who's life was saved by (1+ / 0-)
    Recommended by:
    Denise Oliver Velez

    Gilead, I am afraid I don't see the point, other than Big-Pharm is profiting, not just Gilead.  I see ALL corporations as being profit driven, not just Gilead, ad I have to say that Gilead is MORE compassionate towards patients than any other company I know of.

    It is COMMON practice in Big-Pharm to change the formula of a drug the second the patient expires. Gilead is a profit driven company, but in my life they have shown tons of compassion.

    When my T-cells were at 24, my doctor approached Gilead about a new drug that they had that was promising, and at that time MY only hope.  Gilead found a slot for me in A STUDY and I got the drug in days after my Doctor had approached them.  In weeks I THRIVED on this drug, my t-cells went from 24 in 2005 to over 400 in 2006, to now over  750 in 2012.  Gilead paid for ALL my AIDS drugs for years until life circumstances lead me to being barred from the study.

    When life circumstances allowed, my doctor was able to reformulate my cocktail without unapproved drugs.  But I still give thanks for Gilead, their drug assistance programs, and their willingness to as a corporation show such compassion as to allow one thriving patient to be kept on a drug that was clearly a failure to everyone else.

    I agree, CORPORATION ARE EVIL, I agree that there is NOTHING BUT profiteering in Big-Pharm, but having been a life thanks to Gilead and their drug research, I think that you are pointing out a systemic problem, and making Gilead a bad guy when as far as I am concerned, they are least EVIL of the profiteering Big-Pharm companies, and in my one singular case, showed nothing but compassion.

    It doesn't surprise me Gilead would want a meeting, they are the best of a bad bread, they have been patient advocates for as long as I can remember and their Compassionate Use program has to be the best and most generous in the industry.  I hope that you go to the meeting with Gilead, and I hope they explain all they have done to help patients in this pandemic.

    When my lfe went to hell in a hand basket, the one thing I could count on was Gilead, they continued my health care and drug therapies when I was broke and insurance-less, when my doctor of 17 years retired and closed his practice, it was researchers at Gilead that helped in my search for a new doctor, and lead me to my new Doctor who I totally think is an Angel!\

    I have to agree that their are Systemic problems in the way drugs are researched and developed, but I believe that Gilead's Compassionate Use program has to be the most liberal in the industry.

    Gilead might be over charging the Big Bad Government and AIDS Inc. for their drugs, but if you are a patient in need they will do everything in their power to make sure one get's the drugs they need to survive.  In my own case it was Gilead that fought for me, and tried to move Mountains to ensure my continued good health.

    One could argue I was a data point to Gilead, but I never felt that way.  I will be at the protest to protest what I see as a systemic problem and systemic  means FDA in this case, Gilead and all corporations are just doing what they are supposed to do, increasing profits for their shareholders.  But I think as a corporation Gilead shows patients a lot of heart!

    - Jeff US Army/Retired ... With a long enough lever one person can move the World! DoSomething-Anything.Info

    by l3m0n on Wed Dec 12, 2012 at 06:25:22 PM PST

    •  Glad to read about your T's (1+ / 0-)
      Recommended by:
      bubbanomics

      many people near and dear to me are still here because of Compassionate Use.

      But I fault them, and all of Big Pharma for raising prices on drugs and were it not for activism (and shaming) those compassion programs wouldn't exist.  

      ARV affordability and access is still a major problem in developing countries,
      Without activism Gilead and other companies would not have made compromises.  

      http://www.avert.org/...

      The battle must continue.  

      Democrats Caution Gilead Over Quad Pricing

      http://www.pharmalot.com/...

      In an attempt to get ahead of the curve, 14 Democratic members of Congress have written Gilead Sciences to caution the drugmaker to maintain a reasonable price for its forthcoming ‘Quad’ AIDS drug, a once-a-day treatment that was recently recommended by an FDA panel and may be approved by the agency this month. They express concern that Gilead may charge as much as $34,000 for Quad, which they say might contribute to further strain on state AIDS funding programs.
      How so? They note that Gilead froze prices through 2013 for drugs provided to ADAPs, or AIDS Drug Assistance Programs, run by the states. But at the same time, the drugmaker boosted prices for its meds in the commercial market: a 7.9 percent increase on Truvadam, a 7.3 percent increase for Complera and a 6.6 percent increase on Atripla, which raises costs for privately insured and Medicare patients.
      “As a result, Ryan White Part B programs that help these patients afford their co-pays and deductibles now face overwhelming demand and have instituted waiting lists. Given that Ryan White Part B funds both the co-pays and deductibles of privately insured patients as well as ADAP, price increases for antiretroviral drugs in the commercial market diminish the ability of ADAPs to purchase drugs and sustain their case loads,” they write to Gilead.
      I have always questioned the R&D cost excuses, and supported Brazil and Nicaragua in ignoring patents and producing their own generics at very low or no cost.

       

      Join us on the Black Kos front porch to review news and views written from a black pov—everyone is welcome.

      by Denise Oliver Velez on Wed Dec 12, 2012 at 07:35:17 PM PST

      [ Parent ]

      •  Actually, you can get my tens of thousands (0+ / 0-)

        per month AIDS drugs in Africa for 32 cents a month.  The problem is not Gilead it is BIG Government, AIDS has become big business, and no one is looking for a cure, just longevity on their over priced drugs!

        I just think that the problem with pricing has to do with Big Government PAYING what they are asking.  AIDS Inc is not just businesses, it is also Government programs that just continue "more of the same".  I think Single Payer insurance would help with this.  Revisions to the FDA Fast Track program would help with this, and making drugs patentable is ALSO a huge problem.  

        Why single out Gilead when the things that were pointed out are true of all drug companies.  I will be honest GILEAD IS MY HEROS, I AM HER TODAY TO BE ABLE TO WRITE THIS BECAUSE OF GILEAD.

        Why aren't we protesting a failed government system like the FDA Fasttrack, which is a broken system costing millions in overhead.

        - Jeff US Army/Retired ... With a long enough lever one person can move the World! DoSomething-Anything.Info

        by l3m0n on Wed Dec 12, 2012 at 08:17:13 PM PST

        [ Parent ]

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