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Should AIDS Activists and Pharma Just Get Along?

I’m having an identity crisis. Am I an AIDS activist, ready to question authority and demand high standards of service for those living with HIV/AIDS? Or am I a “resource” for the pharmaceutical industry, so that they might craft more effective community programs that will lead AIDS patients to “care.”

And that care, no matter how they frame it or how sunny the smiles of their community liaisons, ideally would lead patients to their HIV drug product line.

In this video episode of My Fabulous Disease, I take you along to a community advisory board meeting (CAB) for HIV drug manufacturer Janssen Therapeutics, formerly known as Tibotec. There was something about the cordial way in which the invited HIV advocates provided helpful feedback to the pharmaceutical executives that felt… a little strange.

Although I have agreed to keep the particulars of the meeting private, I will say that there were no fireworks on display ” or any real antagonism to speak of. We advocates (“activists” seems like too strong a word) offered our best advice to Janssen, they appreciated it very much, lunch was served, and everyone left happy.

protest10And I felt as if I had failed somehow. I had allowed the topics to be entirely in the hands of our hosts, and any issues that deserved discussion but were not on our elegantly typed agenda ” educating patients about treatment risks, or, God forbid, drug pricing ” were never discussed. I didn’t feel like much of an activist. I felt like a focus group member.

It’s very possible that my attitude here is outdated. In the early days, we took to the streets because societal apathy and ignorance demanded it. We protested and threw red paint and otherwise shamed the pharmaceuticals into better medications, broader access and more community involvement. Those battles were waged (and largely succeeded) many years ago, while pharma has come through with an astounding arsenal of successful HIV medications. Why does something deep inside me resist civil dialogue that advances our mutual interests? Am I living in the past, being an activist without a cause?

Clearly, we have some common goals, chief among them HIV testing and access to treatment. And pharma has resources that community organizations could only dream of, so advising them on creating the best campaigns possible (to get tested, to “get into care”) makes sense. So why was I so ambivalent?

Activism should make people uncomfortable. Just ask Larry Kramer. I watched the late, great Martin Delaney, founder of Project Inform, demand in similar meetings that more be done in terms of drug efficacy and proper data and experimental drug access. He made me very uncomfortable and I was on his side. Martin usually got what he wanted. And he wanted it for you and me.

At least, through this video, I get an opportunity to discuss some pressing concerns not covered in the community meeting. I question some basic assumptions, such as whether our hard work on the ADAP crisis is pulling attention and resources from the “big picture” of pharma drug pricing and generics, and I offer an indictment of our U.S. health care system for good measure.

There are still confrontations to have and tough arguments to make, and the agendas of advocates and pharma alike should always be questioned.

It just might be a little uncomfortable.


(“Enjoy AZT” image credit: ACT UP New York)



ADAP AwardThis blog is officially an “award winning” blog! The hard working folks at the ADAP Advocacy Association (aaa+) have honored me — and I most sincerely am quite honored — with an award for Social Media Campaign of the Year. The award was part of their first annual ADAP leadership awards dinner, held as part of the ADAP conference held in Washington, DC. aaa+ was impressed with my video blog about the ADAP summit last year, particularly with the simple instructions it gave on contacting your elected official about funding ADAP (it’s not too late to do that, you know). I am in good company: other award winners include Dab “the AIDS Bear” Garner, Butch McKay of the Positive Living Conference, and even my local pharmacy patient advocate here in Ft Lauderdale, Jason King (no relation) of AIDS Healthcare Foundation Pharmacy.

mature-gay-men-dating-tipsI may not be on the singles market, but I sure do appreciate the advice provided by AARP (!) in their online feature, “The Gay Man’s Guide to Dating Over 50.” Most of the piece, by gay writer Dave Singleton, is solid self-esteem building, which is great advice for any age. I’m particularly guilty of being age conscious and grieving my distant youth, so I needed to read this: “Give up trying to be perfect, too, especially if that’s a code word for ‘young.’ Yes, it’s important to take care of your body and your health, but no need to obsess. Instead of trying to be 25 again, get comfortable in your skin. Feel good about your body. That way, when someone touches you, they’ll really feel you, and not a bundle of self-critical tension. Think more about keeping a sparkle in your eyes and less on fighting the fine lines around them.” Maybe next time, Dave will offer a little safer sex advice for those over 50 who actually get lucky.

kiss and tellYou may know that, in a 2010 CDC study of 21 major cities, 1 in 5 gay men were HIV positive. But did you know that half of them do not know they are positive? And that young black and Latino men under 25 were the least likely to know their status? Gay Men’s Health Crisis (GMHC) in New York is hoping to change that in their new “Kiss and Tell” campaign. “Kiss & Tell” encourages black and Latino young gay men to have discussions with partners about their sexual history and HIV status, and includes education, networking and skills training. “This campaign reinforces GMHC’s ongoing commitment — since our earliest days — to addressing homophobia and reducing the spread of HIV among gay men,” said Marjorie Hill, PhD, Chief Executive Officer of GMHC. “The campaign directly challenges homophobia, and acknowledges the value of relationships in the lives of young gay men while encouraging dialogue.”




  1. Kimberly Gardner July 12, 2011 at 9:51 am

    Congrats on the award, Mark. Love the blog!

  2. Robin T Webb July 12, 2011 at 10:27 am

    Mark, congratulations on your award from aaa+. It is well deserved. I really enjoyed your blog on the Janssen CAB meeting, but hey, I enjoyed all your blogs. Keep up the wonderful work.

  3. Mark Hubbard July 12, 2011 at 10:55 am


    Thanks for taking the time to bring some balance to this issue and thanks for going a bit in depth.

    I have a few (hopefully constructive) comments:
    1) The term Community Advisory Board is used to describe a variety of activities, but I don’t consider a one time meeting a CAB meeting. Most CABs are ongoing enterprises that enjoy some level of indepenence, and some of the most important are housed in the sites where the NIH funded HIV/AIDS research networks implement studies. These also grew out of ACT UP activities as well and that story is worthy of a blog by you. While it sounds like this meeting was good, there is definitely a history of similar pharma-sponsored meetings that are primarily marketing efforts.
    2) The work of ATAC and the Fair Pricing Coalition are critically important to the matters you discuss in this v-blog and are under reported. These are ongoing advocacy organizations that do the work you describe, but more so on the community’s terms. How about helping them out with some publicity?! ;^)
    3) I don’t believe ADAP costs $12,000 per person per year – in fact it is significantly less. I understand why folks use these kinds of numbers, but I’m not sure it serves us in the big picture. Doing so may be helpful if you want to emphasize how expensive therapy is, but not so helpful if you want to take pride in other advocacy efforts and the oft-under-credited government efficiencies involved. Most states (and their ADAP programs) purchase drugs at a discounted (340B) Medicaid related rate. Moreover, states can seek rebates for drugs that are purchased by private insurors if premiums are underwritten by ADAP funded assistance programs, which brings the average even lower. These facts are great rebuttals to those who constantly decry “government inefficiency.”

    Keep up the good work.

  4. Carole Ann July 12, 2011 at 11:05 am

    If I had to choose a word to describe you, Mark, and I have many to choose from, I would choose “watchdog.” You are not one to sit on the sidelines of any topic and not question the ethics or authenticity of the subject. I would expect no les from you especially on this topic. In the end, you always make the reader think and that is powerful journalism.

  5. Roy July 12, 2011 at 11:45 am

    Ok, I’ve been a nurse for over 30 yrs., many of them were in HIV Research & HIV Pharmacology Research back in the late 80’s & 90’s. Back then we’d get paid that $500 to speak for 15 mins. at Pharma dinners at fancy hotels, usually on topics such as “medication compliance among the different groups of HIV patients.” Be they rich or poor. At the time the ‘not poor’ got most of the attention. We used to joke to our employers that we now had a $2000/hr salary with benefits of sticky notes, pens, calendars, etc. Now fast forward to the present. Over 20 years of being poz myself, being now graduated to AIDS, umpteen side effects later & struggling to enjoy some sort of retirement, I have no taste for Big Pharma. I have also graduated to advocate for NO health care for profit. Any energy I have left goes to doing what I can for total revamping of our healthcare system for all, not just HIV/AIDS. Altho, I appreciate your hard work & the others you worked with, I pick my battles differently today. My dream today is to see an ACT UP like organization, only 100x’s bigger to bring about the downfall of all insurance companies & healthcare agencies that are in it for profit. As a nurse there would be no greater event to happen in my lifetime, except to say that I am forever grateful not to be swimming in the same sewar with Big Pharma today. It takes too long to get that stench to go away. I congratulate you for being able to swim with your head above the water. Just be careful when they flush, and make NO mistake, they will. They always have. New lipstick on that pig doesn’t change the pig.

  6. Eddie July 12, 2011 at 2:47 pm

    Response to Mark Hubbard:


    The true actual unit cost for uninsured ADAPer’s is more like 880 per month, so thats even after 340B pricing and being rebated.
    So from 1000 to 880 per month is NOT significantly less. In addition, they are using the cost recovery process from insured ADAPers to subsidize the non insured folks. Therefore, if the insured folks pull out , all of the models would collapse nationwide.

  7. Emmanuel July 12, 2011 at 4:00 pm

    Thanks guy for this (so) true story! Some are still aboard…
    Emmanuel from Act Up-Paris

  8. Randall July 12, 2011 at 7:56 pm

    Nice Work, Mark,
    I’ll bet 21 dollars could have bought a whole lot of Red Paint IN Philadelphia…..no security clearance required. God Forbid Janssen (And The other Phama Companies) institute 340b (or even 403c) Pricing across the board… making their drugs MORE Affordable… If you’re into CAB’s did you know there was an standing CAB for the ACTG unit at U of M/Jackson Memorial Hospital that needs “Advocates” and “Activists.”

  9. GeorgeCarter July 13, 2011 at 6:30 am

    THANK YOU! Beautifully put.

    Sometimes the simplest notions can be so easily dismissed as “simplistic” when in reality they are merely accurate. The ADAP crisis is driven by the pricing policies of pharma. Period.

    Policies that are embedded in aggressive “free trade” agreements pressed both by the US Trade Representative and the EU to try to curtail access to generics, via TRIPS-Plus, data exclusivity and other colonialist ideals designed to thwart any competition that might interfere with the monopolisitic “right” for patent-medicine companies to charge what they want and corner the market. Let alone the outrageous “impossibility” of federally negotiated drug prices in the United States.

    And as a DIRECT result of this, worldwide, literally MILLIONS of men, women and children are DYING. EVERY DAY THOUSANDS DIE. After having suffered horribly, needlessly. And 8000 on ADAP lists here in the US. All simply because they KNOW their actions and greed cause this suffering and they push for it anyway. And you know what I call that? Economic genocide.

    It’s very simple. Greed kills.

    And no matter how much we nudge details of trials, it takes no brains at all to see this simple fact. Sadly, that somehow makes it not worthy of attention. More sadly, the efforts of the Fair Pricing Coalition have met with, at the very best, only the most nominal success against the juggernaut of pharma’s greed and their hostage-holding threat of ending research in HIV if they can’t charge whatever murderous price they wish.

    And as a queer living with hep C for 30 years but no ADAP program–I can relate to your other comments even as I wholeheartedly agree that the ADAP is essential…and SHOULD be a model for other diseases and conditions.

    But ADAP’s problems COULD be solved not by a “Confessions of an Economic Hit Man” style increase in funding (have you read that book?) – but by negotiating drug prices and invoking eminent domain if need be. If we had a government that served the people and not corporate profits and interests. While this may seem impossible and daunting, things DO change.

    Thanks for being there, Mark. Keep raising hell!!

  10. Madelyn Griffith-Haynie July 13, 2011 at 6:33 am

    Mark – RE: does it really matter (whether you are Pharma Poster Boy or Activist) . . . It matters. You matter. The bigger picture you bring up on the video matters. Health care. Matters. Human beings matter. Right down to the lowliest of the most disenfranchised of us. Sing out, Louise – you voice is what matters. Unfortunate that it NEEDS a voice, but thank you for giving it one. For ALL of us. We matter.
    mgh – Madelyn Griffith-Haynie
    (blogging at ADDandSoMuchMore.com!)

  11. Robert Reynolds July 13, 2011 at 7:19 pm

    Dear Mark Congratulations for an inspired video and ADAP Association recognition. Sorry we did not get time to know one another at the Conference.

    If you speak your mind openly without making it personal, then you should be welcomed by PHARMA. Even if you demonstrate passion as a result of specific experience, then PHARMA should welcome you and your contribution. If you feel as if you cannot speak openly, then I question whether your participation is welcome and just as importantly, constructive. I have been disappointed in the timidity of those who represent the HIV community that serve on boards that consider pricing concessions. We have blocked real progress by limiting discussions to a single issue or treatment. The cost of drugs is a clandestine process. Why? Because they do not want the public to know! The insurers, the medical community and Hospitals are supportive of closed sessions because they also have skeletons to keep covered up. Why Congress has not opened the doors is explainable, the institutions in question directly and indirectly provide huge sums of money to run campaigns and Issue PACs.

    The middle class has been pushed out of the arena and in fact are being eliminated by the interests that can fund their pet projects. Since when has an income of $250,000 a year become “middle class.” College tuitions are out of range for ordinary working families (with two incomes.) Health care is not affordable in groups, for employers and out of range for an individual. At one time the US had 3 families out of 5 with home ownership–being subsidized through tax credits for mortgage interest. Today even that subsidy is inadequate for a young person or couple to afford home ownership.

    The government subsidies, such as medicare part D, tax credit for research etc far exceed the “discounts” offered to government agencies purchasing drugs through programs such as Medicare, Medicaid, VA Health. They amount to welfare subsidy to the wealthiest corporations in America. If we put the government credits corporations receive on the table as we do the individual “entitlements”, you would have a revolution on your hands.

    Speak the truth and let the chips fall where they may. If we all speak rationally but truthfully, the empire will fall. So long as one person who needs and will follow the protocol of useage is left without life saving medications, we have an obligation to speak out.

  12. Rich in Boston July 13, 2011 at 10:06 pm

    Mark, as always thanks for this installment of your blog. You present a difficult and complicated with your special brand of humor and in turn give a fresh insight.

    We POZ folk and big pharma have such a difficult and at times dysfunctional relationship. I mean how can we be expected to sink our teeth into the hand that keeps us alive?

    On a recent check up my NP and I discussed coming summer plans, the weather, work and oh ya my numbers, almost as an afterthought, looks great as usual. I said “well thanks to my best friend Atripla” only half joking really. I know I’m blessed to have insurance and oh so lucky in turn to afford my “best friend” …but I know he’s a fair weather friend and will drop me the moment I can’t afford him, loose my job hence insurance.

    What a state we’re in with healthcare in this country, to know my life (and millions like me) depends on a dysfunctional relationship that can blow up at any moment. As you so rightly pointed out, we HIV’ers are LUCKY compared to say cancer patients who have no programs to turn to for drug assistance.

    All my love and appreciation goes out to the boots on the ground that fights for my survival everyday. And yes, thanks to big pharma who do reach out as they have here to the community for activist input

  13. Mark July 14, 2011 at 12:52 pm

    $500.00, good food and a fine hotel. Not bad for a bit of tokenism and PR for PhARMA. Not putting this on you Mark, but the drug companies have worked VERY hard to LOOK like they involve and engage PWA’s so we don’t notice the ridiculous profits they make.

    Come on, if PhARMA was serious about access for us, we wouldn’t have close to 9,000 people on ADAP waiting lists. We’d also have faster progress toward generics, instead of them ‘re-formulating” and keeping the prices high. Remember when Norvir was just another somewhat effective PI ? THEN they learned that it boosted bio-availability of other PI’s and the price was raised 400%!!!!!!!!

    We need to stop acting like it’s an honor and privilege to be ‘invited’ to the table — ESPECIALLY when the select few PLWH/As are led to fancy hotels, nice dinners, paid flights, conferences, etc etc etc.

    Its simply BULLSHIT.

  14. Andrew Paquette July 14, 2011 at 4:25 pm

    I’ve heard major Advocacy voices state why they believe your messages are so popular. I disagree that it’s the simpleness as in “dumb it down” content of your work, but your larger, higher point of view. From 10:00 minute point on to the conclusion you NAILED IT. I have difficulty marching on the streets for an individuals earning $43,000 to receive without contribution or co-pay free medicine, etc. just because they’ve tested HIV when I witness the TRULY DISENFRANCHISED segments of society without.

    In 2005 Florida Medicaid eligibility dropped from 88% to 74% of the Federal Poverty Level (FPL). Notice both these percentages are below FPL (100%) which dropped 12,000 truly poor individuals from Florida Medicaid and there was no big “ta-do”. With ADAP we are talking about 300, 350, 400% FPL and up earners. Meanwhile in my metropolitan area (EMA) our eligibility for Part A RW had no income restrictions, no income limit at all ever. It wasn’t until 2008 because Florida had raised their 300% to 400%FPL that the EMA followed with their first ever income cap.

    To this day I can not understand how that was kosher given the 1990 Ryan White Care Act Legislation is riddled with the term “low income” throughout. As you put so well, I am so pleased by our AIDS community whether paid or on their own dime for what benefits continue today. But I am also burdened with sadness for those in need who go without. This is why you are FANTASTIC to me. You have the capacity to see the larger picture, higher point of view.

    -Andrew Paquette

  15. Sean Strub July 15, 2011 at 12:07 am

    Excellent piece, Mark. Thank you so much for going to the fundamental issues and explaining them in such a clear fashion.


  16. Eddie July 17, 2011 at 8:55 pm

    @andrew: The problem that you describe with FPL is in the law itself. “Low income as determined by state.” Co-pays even with insurance run 33% so in that context 43,000 gross is low income when you have to shell out that kind of money.

    The whole thing in the nutshell that I see is this.On the one hand, the program will never be fully funded, nor will the government allow Pharma to get reined in. All of the inter relationships within ADAP, are so convoluted and so complicated that people are now getting hurt and killed in the process.

    @Robert I agree with you 100%. The drug prices have now become so high, the states are now attempting to institute illegal and draconian measures to keep programs afloat such as medical criteria or in event they cant do that, they will be dropping the FPL down to 100%.

    Therefore, if the government cant afford to add more money, and demand doesn’t decrease, what else is left of the three legged stool?

  17. @Jims_Whim July 18, 2011 at 10:57 am

    There are already about 100 different points of discussion just in the 15 comments on this post alone, proving just how effective (and affecting) you are, Mark. It also shows how well-deserved your award is and how important you are within the HIV advocacy arena. Thanks for the inspiration, and congratulations on the award!

  18. Sam July 18, 2011 at 3:37 pm

    Very, very informative, Mark. So were the comments. Keep up the good work and keep making me laugh, even at the tough stuff. I need a good belly laugh once in a while. Peace

  19. Michael Connett July 21, 2011 at 2:42 pm

    Thanks Mark!
    I was very interested & appreciative of your comments at the end where you talked about all the ‘lil constituencies making sure they get theirs & pushing the truly disenfranchised & marginalized further away from getting what they need. In my advocacy work for the HIV Community — both those infected & affected — I speak to everyone because we all are at the very least affected. It’s very disheartening to hear the glbt members gloat about what they have and even go so far as to think that their equality achieved gives them superiority over others.

  20. Sue July 31, 2011 at 10:19 am


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