October 23, 2020 The Newspaper Serving LGBT Los Angeles

Larry Kramer: no leadership on AIDS spells disaster

I come before you once again to tell you that the state of research for some kind of cure for AIDS at the National Institutes of Health is in the toilet.

As reported in Poz, a statistical model has predicted that over the coming years, if present trends continue, by 2035 there will be 1.39 million cases of AIDS in America alone, and some 435,000 deaths, costing the healthcare system some $256 billion.

Last year, an estimated two million people were newly infected with the virus worldwide, according to data from UNAIDS. In America, one in eight people infected with HIV do not even know they are infected. One in four new HIV infections occur among youth and young adults ages 13 to 24. Moreover, there was a 22 percent increase in new HIV infections among gay and bisexual men in this age group between 2008 and 2010. In Los Angeles, as reported recently in The Pride L.A., recent years have seen the number of new HIV cases at around 4,500 annually, and nationally that number is around 30,000. “In 1995, a record 50,877 Americans with AIDS died — a one-year count rivaling the 58,000 Americans lost in the entire Vietnam War.” (Frank Rich, New York).

HIV and AIDS patient death rates have dropped significantly among western nations thanks to treatment successes.

But treatment is not always gentle. I have dutifully taken my AIDS meds since they became available and still have respectable T cells and undetectable levels of HIV.

Yet I have three times almost died.

I spent most of last year in hospitals. Hospital care in this city — New York — is awful and depressing, especially when they can’t find out what’s wrong with you, which was the case for me.

All of this has been very expensive. Even with ample insurance, the resources my husband David and I now have to get us through our declining years are diminishing. For the first time I am frightened, particularly for David, who is younger and who has sacrificed so much of his own career as a successful architect and designer to get us through all of this.

It was David, more than any doctor, who saved my life. I fear for anyone who suffers any serious illness without such a caring partner.

As the survivor population ages, our situation will be an increasingly common one.

I recently spent the day with staff and volunteers at New York City’s Gay Men’s Health Crisis. Under the dynamic leadership of the agency’s C.E.O., Kelsey Louie, and Board Secretary Roberta Kaplan, the organization (which was started in my living room in 1982) serves more than 9,000 clients and feeds several hundred every day. Many of the volunteers and staff of 90 are working there in memory of loved ones who died of AIDS. It was an exceptionally moving experience for me to be with them. They witness first hand and on a daily basis the impact of all I am talking about. They see the many difficulties patients face in their daily lives, the financial toll treatment imposes on families, the psychological impact it has on relationships, and the physical impact treatment has on many people (particularly as people age).

And now we have PrEP. We are learning that, like all HIV medications, it has side effects that manifest over time. Modest but significant bone density loss is now being seen in those taking Truvada (the only drug approved for PrEP) and more so in those taking a higher dose of Viread. Peak bone mass is an important predictor of fracture risk later in life.

New York City’s department of health is concerned about an increasing number of cases of sexually transmitted diseases like syphillis and gonorrhea. PrEP offers no protections against any of these. This very same department of health has seen fit to close down the public health clinic in Chelsea, the New York neighborhood where gonorrhea and hepatitis C numbers are especially out of sight .

NIH director Dr, Francis Collins is pictured here with Hillary Clinton and Dr. Anthony Fauci.
NIH director Dr, Francis Collins is pictured here with Hillary Clinton and Dr. Anthony Fauci.

The appointment of a new head of the Office of AIDS Research (OAR) at the National Institutes of Health has been delayed again.

This is when my fear turns into anger and then rage. What is going on here? Or rather, what is not going on here? Or rather, what is still not going on here? This plague is 35 years old.

OAR is where the research money is. Its director is the person who determines where that money should go, which researchersshould get it and what they should focus on. Its last director, Dr. Jack Whitescarver, a gay man whose tenure brought mixed reviews, retired on June 30. His impending departure was surely knowN for many months prior to June. One would think in a decent, well-managed, sensible, practical, and humane institution, his replacement would have been ready to seamlessly take over control on July 1.

But the NIH is none of these things. One is struck over and over how casually they waste time, and have done so for these 35 years (and counting) of this plague.

Several months ago, a small group of us (representing amFAR, GMHC, ACT UP, and Treatment Action Group) confronted NIH director Dr. Francis Collins, demanding to know what was happening, not only with a new OAR director, but also with the sorry state of their research.

It is no secret now that there’s no cure in sight and that Whitescarver and Dr. Anthony Fauci have been less than forthcoming about their failure to come up with very much. Dr. Fauci is the Director of NIAID, the National Institute of Allergy and Infectious Diseases, which should be in charge of AIDS, but he is a director who is not allowed to touch the money, which must come to him via OAR via Dr. Collins. Talk about a bureaucratic nightmare! And all these years, Dr. Fauci has led us to believe that he’s in charge.

Anthony Fauci has said many times that he doesn’t want to retire until he finds a cure for AIDS. I once believed him. I once believed there was a cure for AIDS. Dr. Fauci, Dr. Collins, the NIH have done their best to refute this notion and tarnish my hope.

“It’s clear that you have a limited time of effectiveness in Washington if you really are doing anything. If you’re not doing anything, you can stay there indefinitely,” said Dr. George Mueller, whose tough-minded management dauntlessly and successfully supervised getting a man on the moon and then immediately leaving NASA and Washington to return to the private sector. Dr. Fauci has been in Washington for some 40 years.

Dr. Anthony Fauci vowed he wouldn’t leave Washington until he found a cure for AIDS.
Dr. Anthony Fauci vowed he wouldn’t leave Washington until he found a cure for AIDS.

One in eight Americans infected with HIV still don’t know they have it.

According to Dr. Collins, a final candidate for the OAR director is expected in December or January at the latest. A search committee (which fortunately includes our Peter Staley) is currently reviewing the full packet of applications, and will be interviewing candidates on November 10. They’ll send their “short list” of three or four recommended candidates to Collins about a week later. At that point, their job is done, and Collins picks from this list. God only knows how long he’ll take, and God only knows how long the new head of OAR will take to figure things out, to settle in, to fund new research.

A former head of OAR called a moratorium for an entire year while he tried to learn everything he was meant to know. We do know Collins is more interested in Alzheimer’s than AIDS and Congress is not interested in AIDS at all.

Any sense of urgency at the National Institutes of Health, which by charter is meant to look after the health of all the American people, is invisible and relatively non-existent. Time is being wasted on a never-ending daily basis. That it will take this long to fill a vacated position for a new OAR chief is a perfect example of how this place wastes time. By Dr. Mueller’s definition they’re not doing anything. They’ve all been in Washington too long.

LARRY KRAMER is a founder of both GMHC and ACT UP. Volume One of his history of this plague,The American People, has just been published. Last year Yale University awarded him an honorary Doctor of Humane Letters.

Related Posts

AIDS Memorial Quilt Virtual Exhibition

October 15, 2020

October 15, 2020

The National AIDS Memorial is announcing a virtual exhibition of the AIDS Memorial Quilt (the Quilt) that will feature more...

AIDS Walk Los Angeles 2020

August 27, 2020

August 27, 2020

AIDS Walk Los Angeles (AWLA) is the world’s first walk to fight HIV and AIDS. 35 years ago, a group...

Honoring National Black HIV/AIDS Awareness Day at the ONE Archive

February 4, 2020

February 4, 2020

National Black HIV/AIDS Awareness Day is on Friday, February 7. In the LGBTQ+ community, HIV/AIDS disproportionately affects gay black men...

Public Outcry Temporarily Saves Los Angeles LGBT Center’s STD, HIV Services

January 28, 2020

January 28, 2020

The temporary agreement restores funding through the end of March. The Los Angeles LGBT Center announced today that it has...

HEALTH FEATURE: Need a Podiatrist?

January 26, 2020

January 26, 2020

Dr. Steven L. Rosenberg treating foot injuries with traditional, regenerative and homeopathic medicine.  By Staff Writer If you suffer from...

GUEST COLUMN: Queer Mindfulness Meditation

January 22, 2020

January 22, 2020

InsightLA is a non-profit meditation center offering practices of mindfulness and compassion that are both secular and Buddhist in origin. ...

New CA Bill to End the Epidemics of HIV, Hepatitis C and Other STDs in LGBTQ+ Community

January 18, 2020

January 18, 2020

Senator Scott Wiener (D-San Francisco) recently introduced a bill that would require state agencies to create and enforce a master...

WeHo Dodgeball at the Sin City Classic LGBTQ+ Sports Festival

January 17, 2020

January 17, 2020

Hosted annually by The Greater Los Angeles Softball Association (GLASA), Sin City Classic brings together the United State’s finest athletes for a...

VIDEO: Grand Opening of Los Angeles LGBT Center’s New Campus in South LA

January 15, 2020

January 15, 2020

‘Center South’ will provide HIV testing; access to PrEP and PEP services; housing case management; mental health services; a computer lab; and...

TRAVEL REVIEW: LGBTQ+ Family Vacation: Holiday Edition – Las Vegas

December 21, 2019

December 21, 2019

This column is the second in a reoccurring series about LGBTQ+ family travel. For a preview of this travel column,...

Open Letter to FB Demands Removal of “Factually Inaccurate” Lawsuit Ads Attacking HIV Medication

December 14, 2019

December 14, 2019

Dozens of LGBTQ+, HIV and public health organizations have signed an open letter calling on Facebook to remove law firm...

COLUMN: “The L Word: Generation Q” is a Pandering Mess

December 11, 2019

December 11, 2019

It’s strange to look back across a period of ten years and realize how much you’ve changed. Things that felt...

HEALTH FEATURE: Preventing Sudden Hearing Loss at Alexander Audiology

December 9, 2019

December 9, 2019

Santa Monica’s Dr. Melissa Alexander discusses sudden idiopathic hearing loss Sudden idiopathic hearing loss, or sudden deafness, is an unexplained...

DEAR AIDAN: Bro Wants to Downplay My Relationship with My Husband?

November 26, 2019

November 26, 2019

Dear Aidan! The Holiday season is coming up and I am going to be going back to my hometown for...

City of WeHo Survey Seeks Public Feedback to End HIV Stigma

November 16, 2019

November 16, 2019

The City of West Hollywood needs the public’s health recording data on HIV stigmatization.  “Stigma and discrimination are potentially the...