Sean Strub

Stephen Gendin, one of the truly great AIDS activists, died a decade ago, on July 19, 2000.  A few days ago, a group of Stephen's friends, and his father, gathered in New York to remember him.

He was an exceptional person, a close friend and someone I think about often and miss tremendously.  Here's a link to a brief video about Stephen, including humorous footage from a local news station in his Michigan hometown when he, as a teenager, became a member of Mensa.

Stephen and I met in 1988 through ACT UP/New York, when he was a recent graduate of Brown University and we were both on ACT UP's fundraising committee.  By day he worked in the development office of the Archdiocese of New York and by night and on weekends was an AIDS activist. 

I was appalled that he was working for the anti-condom, anti-HIV prevention Archdiocese (this was not long before we began planning the demonstration at St. Patrick's Cathedral) and vowed to get him more suitable employment.  He went to work on my campaign for Congress in 1990 and then (after I lost the race) he joined my company, helping to raise funds for community non-profits, co-founding Community Prescription Service and playing an integral role in the success of POZ.

Stephen and I had very different approaches to HIV treatment.  While I then viewed pharmaceutical treatment as a last option, and sought to take as little treatment as was necessary for me to stay healthy, Stephen was a willing guinea pig, his body a non-stop experimental laboratory for new treatment strategies.  His curiosity and courage contributed to what we have all learned about anti-retroviral treatment. 

While we differed in our approach to treatment, neither of us ever felt compelled to prove one another wrong.  We recognized that there are many paths to survival and each of us needs to find our own.  We were determined to reflect the diversity of approaches to treatment in POZ, avoiding any given "party line".

This individualized approach to treating HIV seems to be going by the wayside, in favor of treatment regimens shaped by pharmaceutical companies competing for market share, recommended by NIH advisory committees with pharma-funded members and often relied upon by clinicians lacking the independence, perspective and experience necessary to treat people with HIV as individuals rather than using a one-size-fits-all treatment approach.   

Stephen wrote with a searing and sometimes painful honesty; the topics he addressed in his columns and articles for POZ are just as relevant today as they were when originally published. Also, check out POZ blogger Shawn Decker's touching reminiscence about Stephen.

For more than a decade, Stephen and I had an ongoing conversation about the epidemic, our community, our friends and our own prospects for survival.  I miss him and can only speculate what we have all lost by his absence.  He is greatly missed.

I have now been on crutches for five weeks, the incisions from the surgery on my ankle are nearly healed and there is more discussion than ever about HIV and ART-related bone loss.

Two weeks ago I had my annual bone density scan and the results are not encouraging.  The most loss was in my spine, at L4, which showed a decline in bone density over the past 12 months of 4.7%.  My "T-score", a measure of the severity of bone loss, is -3.8; the reference range in the report indicates normal is at or above -1, osteopenia is between -1 and -2.5 and osteoporosis is -2.5 or below. 

Norra MacReady wrote a good Medscape article, on research presented in Vienna last week about bone density issues in people with HIV.

Patrick W.G. Mallon, MB, PhD, from Master Misericordiae University Hospital, in Dublin, cited evidence showing that osteopenia, osteoporosis, and fracture risk are significantly higher in people with HIV compared with the general population. In one study of 671 people with HIV in Spain, 98% of whom were on anti-retroviral treatment, 47.5% had osteopenia and 23% had frank osteoporosis.

"To date, there is not a single antiretroviral regimen that has not been associated with bone loss," said Dr. Mallon. Protease inhibitors and tenofovir (Viread) are believed to have the greatest demineralizing effect.

Mallon recommends that every person with HIV be screened using the World Health Organization Fracture Risk Assessment Tool. The test is different by region and race; select appropriately by clicking on the "Calculation Tool" tab.

Those at highest risk, including people with a history of low-impact fractures, postmenopausal women, men older than 50, a low body mass index, co-infection with hepatitis C and anyone who has taken steroids should also consider a DXA scan.

I had my first DXA scan two years ago, when I was diagnosed with "profound" osteoporosis.  I now wish I had gotten a DXA scan many years ago, so I could have measured the rate of bone loss over a longer period of time.  That might give better insight into how much of the loss can be attributed to my ART regimen. 

I am not sure if I will start taking a bisphosphonate or not, but I definitely am increasing my Vitamin D and calcium supplementation and rededicating myself to an exercise regimen. 

I haven't had any beach time this summer (crutches are difficult to navigate on sand), but I'll try to remedy that soon, as sunshine is also good for building bone density.

Thanks to everyone who sent me good wishes for a speedy recovery from my broken ankle, as well as all the links and great advice about rebuilding bone strength.  I'll have more on that topic later, but did want to express my appreciation for the thoughtful emails I received.

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GNP+ (Global Network of People Living With HIV) has just conducted an online survey about stigma and what PLHIV think are the most important elements to measure. More than 200 American PLHIV took part, which is a terrific response.  Thank you.

This was one of the very few opportunities the average person with HIV has to express their experience, thoughts and opinions in a way that will ultimately reach global policy leaders. The results from the survey will inform the work of GNP+ is the largest network of people with HIV in the world as it suggests what measurements for stigma are most important for PLHIV - to include in national reporting, program interventions and UNGASS indicators.  I will share the headline findings as soon as they are available.

A few months ago, I joined the board of the North American affiliate of the GNP+ , in large part because of GNP+' focus on empowerment, stigma, discrimination, criminalization, human rights and similar issues affecting people with HIV.

GNP+NA will also focus on stigma in our presentation at the US Conference on AIDS in September. What can we do in the US about this? What PLHIV led initiatives are there out there to systematically record the Stigma we experience to give us robust evidence on which to base program and advocacy?

We will be talking about the PLHIV Stigma Index (a global initiative founded by GNP+, the International Planned Parenthood Federation, the International Community of Women and UNAIDS) why North America is the only part of the world which has not implemented the PLHIV Stigma Index in any part of its region.

If you are attending the USCA, try to attend our panel. Thanks.

On June 4, I stumbled on a sidewalk in Amsterdam, where I had been at a board meeting of the Global Network of People Living With AIDS.  I fell where a sidewalk went from smooth concrete to the rough, uneven surface of Belgian block.  That simple stumble, not unlike many I have had in my life without incident, fractured three bones in my ankle.  Happening in Amsterdam made it sound almost incriminating, as some have assumed I was drunk or high, enjoying that city's famous reputation.  Not the case; I was stone sober.

It required surgery on both sides of the ankle, a plate, several screws (you can see two long ones on the right and one of the shorter ones on the left) and a whole bunch of pins.  My newly-bionic right ankle matches my bionic left femur, which received hardware after an unfortunate incident with a motorbike in 1987.  The fracture did not come as a total surprise because two years ago, I was diagnosed with "profound" osteoporosis, attributed in some significant part to tenofovir, known as Viread, the powerful anti-retroviral drug I was taking (and which is also found in Gilead's Truvada and Atripla).
 
Six years ago, when I started Viread, I was told nothing of this possible side effect.  While there was already some data indicating some risk, most community clinicians and patient advocates had not been informed about it.

HIV itself, as well as a number of other anti-retroviral AIDS drugs may also contribute to bone loss, but there is growing evidence which points to tenofovir (found in Viread, Truvada and Atripla) as a particularly intense demineralizer.  

I requested a bone density test two years ago, after an acquaintance on Viread, who was in his 40s and relatively healthy, broke his hip.  My test showed, according to the endocrinologist, that I had "profound osteoporosis" and the bones of "an 85 year old woman" (women suffer more severe bone loss than men). 

He advised that I take Reclast, a relatively new drug that required infusions and a daily injection, as well as get more exercise, take calcium, Vitamin D and sunshine, all of which build bone strength.  And to stop taking Viread.

I switched my HIV meds (to Prezista with a Norvir booster) and decided against taking Reclast because its nasty side effects were still being discovered; consumer rating scores I found online were damning. Instead I spent a year with exercise, supplements and sunshine, then had another bone density test.  (The test can only be done about once a year, as changes in bone happen slowly).  The new test showed my bones had deteriorated further. 

After that second bone density test, I felt it urgent that I do something, so I started taking human growth hormone (HGH), to accelerate bone regeneration and help with my wasting.  I had take a course of HGH years ago, so I knew I could tolerate the side effects. I kept up the exercise and supplements (perhaps less regularly than would be ideal).  I am about to have another bone density test and we will see if I have made any progress. 

Bone loss can be stablized or, in some circumstances, reversed.  A tricky part is that one usually doesn't know they have osteopenia or osteoporosis until one either breaks something or has a bone density test. Typically, there are no outward symptoms.

Today, Viread is required to include several paragraphs about how it causes bone loss in their required prescribing information.  The last sentence of it reads:  

"The effects of VIREAD-associated changes in BMD and biochemical markers on long-term bone health and future fracture risk are unknown."

If you are on Viread, Atripla or Truvada--especially if you are an adolescent, female, over 50 or have any history of fractures--I urge you to get a bone density test.  This will give you a base-line against which you can compare future tests to measure the rate at which your bones are demineralizing. 

Five friends (all male, in their 40s and 50s) I know who were taking Viread had bone density tests taken, on my recommendation.  Four were diagnosed with osteopenia (milder bone loss) and one with osteoporosis.

Overall, bone fractures amongst people with HIV are increasing at an astonishing rate.  The HOPS study, as reported by AIDSmeds.com's Tim Horn, showed that from 2000 to 2008, people with HIV had seven times the rate of fractures requiring hospitalization and three times the rate of fractures treated on an outpatient basis, as compared to a similar HIV negative cohort. Three quarters of the HIV positive arm of their study were also on anti-retroviral therapy. 

If you have had experience with bone fractures that you think may be related to your treatment, please post a comment or send me a note.  I think this is a side effect we are going to see with  greater frequency as people are on these drugs for longer and longer periods of time.  If this is what happens after a few years, imagine what it will be like after a few decades?

There is no question that treatment, even with various nasty side effects, is far preferable to the alternative of death.  But it is important that we continue to identify the side effects, alert others to them so their treatment choices are truly informed, and press for research for better and less toxic treatments.  If we wait to hear this information from pharmaceutical companies, or the government, we are waiting too long, after much damage has been inflicted. 

Now, let's see, exactly how much effort has Gilead put into warning people about the demineralizing effects of their drugs?  Perhaps someone can enlighten me.

Yes, our experiences are "only anecdotal evidence" and often quickly dismissed by scientists, pharmaceutical companies and government officials.  But since the beginning of the epidemic, people with HIV have been the experimental canaries in the pharmaceutical coal mine. 

We almost always know the side effects first--through our oft-discredited anecdotal evidence--long before doctors and drug companies and AIDS organizations and government officials tell us about them.

In the meantime, I am out of a wheelchair and learning to hop around on crutches.  The bright side is the surgery is better than limping the rest of my life and the crutches are giving me a much-needed upper body workout

I have been out of commission for a few days, which I'll report on later, but what got me back to my keyboard was the chance to share some exciting news. 

The film rights to The Normal Heart, Larry Kramer's movement-inspiring play about the early days of the epidemic, were optioned by Barbra Streisand ages ago.  The project languished, year after year, and she never got the movie made.

But now, Glee creator Ryan Murphy has the landmark play on the way to the big screen.  Actor Mark Ruffalo, while promoting The Kids Are All Right told MTV News that he's tentatively signed on to play the lead role, Ned Weeks, which is based on Kramer himself.  Check out the full story here.

With the success of Milk and a tremendous upsurge in the LGBT community and AIDS movements' early history, The Normal Heart is sure to generate a lot of interest. 

Kudos to Ryan Murphy for getting the project back on track and to Mark Ruffalo for taking on what is sure to be a challenging and exciting role. 

Brad Davis played the Ned Weeks role in the original production; he was succeeded by Joel Grey and in subsequent productions, the part was played by Martin Sheen, Richard Dreyfuss, Tom Hulce and Raul Esparza.  A great, great role.

There is even some physical resemblance between the Ruffalo of today and the Larry Kramer of the early 1980s.

Whether Ruffalo has the lungs for the job remains to be seen (or heard).

 

I received an email the other day from Louise Binder, in response to my blog post Medical Ethics and the Rights of People With HIV Under Assault.

Louise is one of the founders and the board chair of the Canadian Treatment Action Council and former Board Chair of the Toronto People With AIDS Foundation.

She co-chairs the Canadian federal Ministerial Council on HIV/AIDS; is a member of the Community Advisory Committee of the Canadian HIV Trials Network and a member of the Global Coalition on Women and AIDS Leadership Council. She was the plenary speaker on women and girls at the XVI International AIDS Conference in Toronto.

She makes some important points about how some of the testing and treatment proposals under discussion affect women.  With her permission, I'm sharing her comment:

Great article and great back and forth. I looked at some of the issues that are exacerbated for women due to gender inequality and less access to determinants of health eg education, employment, supportive social networks, gender itself.

First, in the area of testing, it is often very dangerous for a woman to test nominally. Partner notification applies and she may well be subject to everything from physical violence, severe abuse and ostracism, eviction from the family home and accusations of being the source of infection (rarely the case).

Since women are often un/underemployed she may have to stay in this relationship no matter what, for her children and herself. Cultural norms and linguistic challenges add to her instability. Thus, anonymous testing and easy access to it is a must, as part of a range of health care services, rather than isolated so everyone knows what the site is, is crucial for women.

It gives them the chance to know and to make plans to tell their partner either before or after she leaves the relationship. For pregnant women, this issue is even more problematic.

Most jurisdictions (in Canada) automatically test all pregnant women. Ontario is an exception where the rule is to automatically offer testing. Interesting statistics show that Ontario has at least equal and in some cases better uptake of testing and treatment for pregnant women than in provinces in Canada with automatic testing. In fact more HIV infected babies are born in Sakatchewan than in Ontario by far.

Automatically treating anyone is a violation of human rights. For women some medications are better than others in regard to lipodystrophy, depression, and complex multiple daily responsibilities and adherence, all of which affect women more than men in general.

In addition, women rarely have jobs with benefit plans so they are forced onto public plans and must take what they can get, which may not be most appropriate for them. Because they generally have less money than men, even paying dispensing fees, bus/subway fare, copays, etc. is onerous.

Women are less trusting of the health care system and more intimidated by it than men generally so they seldom ask important questions of their doctors leading to poor/no adherence and poor side effect management.

These are a few of the reasons, other than the obvious one that this is a gross breach of individual rights and freedoms, that I think this is not only an unwworkable policy for women but also will not achieve the aims intended and will fail at a great cost to lives and to the health care system.

- Louise Binder