Op-Ed

Some of my patients call them "Skittles." They're small ovaloid morsels that evoke a particular sweetness and pleasure. And they have been a boon in the sex-positive movement in the queer community that has arisen to rival the privilege of relatively worry-free heterosexual sex. Skittles, of course, refers to Truvada (tenofovir disoproxil & emtricitabine), the first FDA-approved medication and currently the only CDC-recommended medication for use in HIV prevention, or pre-exposure prophylaxis (PrEP).

Truvada has not just been a cultural boon; it has been a public health transformation. Estimates vary, but thousands of HIV infections have likely been averted in the U.S. alone. It works well when taken correctly, and has a remarkably good safety profile. Its main detraction has always been, however, its price. While still under U.S. patent by its manufacturer, the retail cost of Truvada is between $1,600 and $2,000 per month or over $19,000 per year per PrEP patient. This year — 2020 — promises to bring some big changes to the PrEP world.

First, a newer version of Truvada is poised to hit the PrEP market. This drug, Descovy (tenofovir alafenamide & emtricitabine), received FDA approval for use in PrEP last October. Manufactured by the same company as Truvada, it contains a new version of the drug tenofovir that purports to have marginally fewer long-term kidney and bone side effects but also carries its own risk of increased weight and cholesterol. For the majority of PrEP patients, however, Truvada remains a perfectly effective and safe method of protection. Descovy has not yet reached the CDC PrEP guidelines, but it is likely not a coincidence that it was developed just in time for the emergence of generic versions of Truvada onto the American drug market.

Generic versions of Truvada have been available outside of the U.S. since early 2019. The Truvada and Descovy manufacturer has reason to be nervous about coming generic versions of Truvada to the U.S. Through its coordination of large-scale trials and expertise in navigating U.S. medical regulatory systems, this company has successfully cornered the multi-billion dollar American PrEP market. Generic PrEP looms large and threatens to cut into the considerable revenue that the monopoly commands.

Recent alarmism about Truvada, however, will potentially undercut this free-market competition. As illustrated in a recent article in the Philadelphia Inquirer (Dec. 30, 2019), the past year has seen a sudden rise in negative publicity about Truvada and its side effects — mostly on social media, and mostly promulgated by law firms seeking to recruit plaintiffs for class action suits against the pharmaceutical giant. Whether intentional or not, the consequences of this alarmism are potentially grave. Exaggerated campaign-style internet postings peddling misinformation about the side effects of Truvada have shaken the confidence of more than a few of my patients, and untold numbers of PrEP patients nationwide have stopped taking their Truvada. Furthermore, this alarmism has kicked off a public near-hysteria about Truvada, which some in the industry may hope will influence the CDC PrEP guidelines committee to coronate Descovy as the first-line PrEP drug in lieu of Truvada. By relegating any potential PrEP generic to second-line status, the CDC would effectively cement the high price of PrEP and the unaffordability of first-line PrEP across many of the communities that need it most. The well-timed litigation against this pharmaceutical company may ironically lead to a continuance of the company's long-term monopoly over PrEP, and along with it, an outsized financial windfall.

This PrEP issue highlights an important debate in healthcare economics: at what point does a drug's cost-benefit ratio rise high enough vis-à-vis existing options to preclude a label of "standard of care"? Do we chase the shiny new medication because it may be incrementally better for a few people, or do we commit to affordable medications for all? For the sake of much of the PrEP community and for the ultimate goal of ending the HIV epidemic, I hope that the CDC keeps Truvada and its generics as first-line options for PrEP, even as it likely adopts Descovy into the mix. My practice, for one, sees mostly patients who would happily continue consuming their "Skittles" — instead of Ferrero Rochers — if it would mean that all their friends could also continue popping them as a first-line act of empowerment.

I grew up in an era of raised fists and dashikis and Afro pics in the colors of the African flag worn in defiantly large Afros. With phrases like “Black is Beautiful” and “Black Power” uttered in public for the first time, affirmation was in the air and a sense that we could do anything. James Brown’s “Say it Loud (I’m Black and I’m Proud)” was topping the R & B charts.

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On March 31, 2020, LGBT older people from around the nation, older people living with HIV and their allies, will descend on Washington, D.C. as part of SAGE’s 2020 National Day of Advocacy (NDOA) to advocate for equal treatment in federal aging policy and under federal civil rights law. Fortunately, Pennsylvania’s senior senator, Robert Casey, has stepped up as a champion for those he represents and LGBT older adults across the country. Just this past year, he and Senators Murkowski and Bennet introduced a bipartisan piece of legislation called the Inclusive Aging Act.  As a credit to Casey and his willingness to work across the aisle, it is the first piece of bi-partisan LGBT aging legislation ever to be introduced in the United States Senate. As Casey said at the time: “For far too long the needs of LGBT elders and seniors living in rural communities have been overlooked. The Inclusive Aging Act would expand access to culturally competent health care services for LGBT elders and help reduce social isolation among older Americans in rural areas.”

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I find myself thinking about the myriad of injustice issues that Dr. Martin Luther King, Jr. championed. One glaring injustice is the treatment of Bayard Rustin by leaders in the civil rights movement. Bayard Rustin was the Black gay organizer for the historic March On Washington. He organized the historic march with 200,000 in attendance to hear Dr. King deliver the famous "I have a dream" speech. I wonder what the dream was for Bayard. Did he have a dream for himself? A dream for LGBTQ people? I am sure that in 2020, Dr. King would have evolved, as his family did, to defend queer folks. 

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Most weeks, someone asks me on social media why I “waste my time” writing for the queer press. I write predominantly for the mainstream press, but I have never stopped writing for the queer press because the stories of our LGBTQ lives must be told, and there is no one else to tell those stories but us. We’re losing the queer press — PGN and Bay Area Reporter are anomalies as independent newspapers that have never ceased publication since the 1970s. There were more closings of queer publications in 2019 than in any other year, and, according to an investigative piece last week by Maya Kosoff, 3,385 American journalists lost their jobs in the past 12 months. A dozen I know are LGBTQ.

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At a rally in Hershey, Pennsylvania on Dec. 10 — the same day Speaker Nancy Pelosi announced Articles of Impeachment against him — President Trump targeted Sen. Elizabeth Warren (D-MA). Warren has dipped in polls as the media has attacked her Medicare for All plan and her proposed wealth tax to get billionaires to pay their representative share of taxes. In Hershey, Trump referenced that drop, saying that Warren “was doing fine until she opened that fresh mouth of hers.”

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World AIDS Day is always a grim memorial. The day marks another year of stultifying numbers of people infected with HIV/AIDS. Another year of stigma not yet lifted and denialism still entrenched. Another year of surviving all those who did not survive.

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On World AIDS Day 2019, ACT UP Philadelphia, the AIDS Coalition To Unleash Power, recognizes 31 years of direct action and civil disobedience. ACT UP membership reflects the AIDS epidemic. AIDS is a non-crisis crisis, now that the disease is impacting primarily Black and Brown people. The majority of infections still come from men having sex with men. Transmissions of the virus are also generated by homelessness, poverty, addiction and stigma. These issues mirror reasons Black and Brown people are disproportionately incarcerated — the only difference is that the racist war on drugs caused those incarcerations.

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This year, to commemorate World AIDS Day, Action Wellness (formerly ActionAIDS), a Philadelphia-based nonprofit organization serving individuals living with HIV and other serious chronic illnesses since 1986, wants you to know about one of the many innovative ways it is working to bring about the next “AIDS-free” generation in Philadelphia.

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