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‘Right to Try’ bill will protect public health

Echoes of AIDS era seen in fight to access investigational drugs

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pills, medicine, Ryan White, health care, gay news, Washington Blade

(Photo by Pöllö; courtesy Wikimedia Commons)

At the height of the AIDS epidemic 25 years ago, only those lucky or well-connected enough had the opportunity to enroll in clinical trials that offered them hope for treatment, when they otherwise had none. But the widespread, unrelenting outcries of AIDS activists like myself spurred the Food and Drug Administration (FDA) to offer patients “expanded access programs” for a few drugs that were nearing formal approval and provided hope to AIDS patients.

Today, the voices of patients and advocates are needed again to give the terminally ill the chance to try to save their own lives.

Recently, the “Right to Try” bill unanimously passed the Senate with full bipartisan support. Now it awaits action in the House as S. 204. The bill codifies a right AIDS patients first demanded a quarter-century ago. It allows people with terminal illnesses access to investigational treatments that meet FDA safety standards but have not completed the arduous efficacy trials FDA requires for marketing. While 38 states have passed Right to Try bills, federal legislation is still needed to protect doctors from prosecution by FDA.

Other countries have more flexible regulatory policies. France’s lenient regulations allow 12,000 French patients access to investigational drugs every year. In the U.S., with five times the population of France, fewer than 2,000 per year make it through FDA’s complicated, lengthy, and expensive application process. A terminal patient is 30 times more likely to get investigational drugs in France than in the U.S. These figures belie FDA claims that the agency meets all needs for early access.

Current FDA application procedures create almost insurmountable obstacles for Americans trying to access investigational treatments. In desperation, many are driven to seek treatment abroad or try underground drugs that are useless, fraudulent or dangerous.

We’ve seen this before. While FDA did reluctantly begin offering expanded access programs during the AIDS epidemic, FDA’s foot-dragging spurred the growth of an AIDS drug underground that ensnared thousands of hapless patients. The award-winning film “Dallas Buyers Club” dramatizes patients’ desperation and heroism, though it downplays the dangers of underground drugs. When stories in the San Francisco papers forced FDA to test a knockoff of the drug DDC, its dosages were found to be inaccurate, which made them dangerous. Some samples contained no actual DDC, while others were adulterated. An activist friend who took another underground drug, trichosanthin, went into anaphylactic shock, almost killing him. Many of the sick grew worse experimenting with underground panaceas. FDA turned a blind eye to the buyers clubs because they provided a convenient safety valve that reduced community pressure on FDA to speed approval of legitimate pharmaceuticals.

Under mounting duress, the agency did grant early approval to protease-based antiretroviral drug cocktails. These quickly reduced AIDS deaths from more than 48,000 in 1995 to about 35,000 in 1996. By 2015 deaths had dropped to about 6,700. It is almost forgotten that AIDS activists and their doctors dragged FDA kicking and screaming into early approval. FDA proposed instead a scheme for “large simple trials” that could have delayed full approval several years. Such a delay would have cost tens of thousands of lives. Ironically, the AIDS activists who targeted FDA saved the agency from a catastrophic mistake it was dead set on making.

The dilemma of Americans denied access to investigational drugs is not peculiar to AIDS patients of a bygone era. Today’s patients with terminal cancer and rare diseases too often find they must leave America to try the newest treatments, if they can afford to leave. Even the prominent and highly educated are driven to try ineffective or dangerous remedies, as was the revered Coretta Scott King before her 2006 death in Mexico. America needs to make the right to try investigational drugs a civil right for all dying patients. Indeed, the right to try is part and parcel of the right to life.

FDA’s mission to protect public health would have been better served by respecting the rights of AIDS patients. These patients were at death’s door and only wanted a chance to live. Giving them that chance would have reduced the very real perils of underground knockoff drugs. But the FDA bureaucracy prioritized guarding its regulatory turf above respecting patients’ freedom to choose. Freedom won that time thanks to AIDS activists’ determination, but its victory is not assured. To ensure patient freedom now and in the future, Congress must pass Right to Try.

 

James Driscoll, Ph.D., a longtime AIDS activist, was an early leader in the fight for access to AIDS drugs. He is currently Healthcare Advisor to Liberty Education Fund.

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WorldPride begins — let’s hope it ends well

D.C. events kick off despite boycotts, Trump attacks

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(Washington Blade file photo by Michael Key)

As WorldPride begins with Trans Pride on May 17,, we can only hope when it is over on June 9t we will all be raving about its success. 

When D.C. first got designated as host city in November 2022, after Taiwan didn’t work out, there were initial estimates of 2.5 to 3 million people showing up in D.C. to party and celebrate. We talked about this 50th anniversary of Pride as celebrating five decades of advocacy, visibility, and unity, for the LGBTQ community in Washington, D.C., honoring the past, celebrating the present, and inspiring the future.

Anticipation was greatly tempered when Trump, the felon, racist, anti-trans homophobe, liar, and all-around SOB, won the election in November 2024. Then the planning became more difficult and stressful. But here we are and the excitement is palpable. The signs are up around D.C. and Mayor Muriel Bowser, who has been so great for the LGBTQ community, is walking a tightrope to keep D.C. afloat, never knowing what the felon in the White House will do next. To her credit, she is doing an amazing job keeping him at bay. But his vicious anti-trans positions, and his general homophobia, have put a cloud over WorldPride. His immigration policies have led countries around the world to tell their citizens to be very wary if they come to the United States. It is projected as foreign tourists stay away, the United States could lose $12.5 billion this year. 

Despite all that, the people at Capital Pride Alliance, who are running WorldPride, have done a commendable job of putting together a program for everyone. From the Human Rights Conference, to the parade, to the festival, where Cynthia Erivo will perform. Shakira will be doing the opening concert at Nat’s stadium, and there are more superstars at the dance party at the RFK site, that should be the site of the new Commanders domed stadium by 2030. 

But let us never forget all this is taking place at a time when the United States has a president who is creating havoc in the world and embarrassing us even among our allies. He is a liar and a grifter, a man who thinks nothing of putting people’s lives in danger whether it is sending people illegally to prisons in El Salvador, or creating a culture so nasty, a trans person takes their life in their hands just walking down the street. 

He surrounds himself with people like Stephen Miller who wants to suspend habeas corpus, and his Nazi sympathizing co-president, Elon Musk, who just got Trump to invite a bunch of racist South Africans to move here. It’s going on while we have a Secretary of HHS, RFK, Jr., who takes his grandchildren swimming in a polluted creek, and tells others to risk their children’s lives by avoiding vaccines. A president who has cut $800 million in grants from NIH meant to do research to save lives in the LGBTQ community, along with cutting grants and programs that have worked successfully to save people in Africa from dying of HIV/AIDS, malaria, and polio. This is what we are dealing with. Like it or not, this is the backdrop to WorldPride 2025.

Yet, if we give in to this horror, we make it even worse. WorldPride is a way we say to people here in the United States, and those around the world, we in the LGBTQ community are never going back into the closet. We are proud, we are smart, and we are valuable. We make the world a better place, and we will continue to do so despite the pig who occasionally sits in the Oval Office when he is not out golfing or grifting. We can never allow the gay Republicans who make excuses for him, the gay Secretary of the Treasury who has yet to speak out for his community, to go unchallenged. Their silence hurts us as much as the felon sitting in the Oval Office because as the Blade wrote, they are traitors.  It is unfortunate, but once again the slogan silence = death has never been more real.

So, speak up, speak out, never stay quiet. Let the world know you are here, and you care. Your life is important and fuck them if they don’t understand that or value it. 


Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist.

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Let love and compassion guide our response to Joe Biden’s cancer diagnosis

Former president is diminished, but he and family deserve love and prayers

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(Washington Blade photo by Michael Key)

When I heard Joe Biden had serious prostate cancer, I felt immediate compassion for him and his family. I am a prostate cancer survivor myself. Then I heard how Trump, and some of his MAGA Republicans, responded and was amazed at how they are able to constantly sink to new lows. Trump’s son posted on X “What I want to know is how did Dr. Jill Biden miss stage five metastatic cancer or is this yet another cover-up???” Clearly, they will never give up on being vile human beings. 

The equally disgusting Joe Scarborough had on a doctor who declared he positively knows Biden must have known about his cancer years ago, although he knows nothing about the case. The reality, coming from many specialists, is at this time only Biden’s doctors know when he was diagnosed, and whether he even had regular PSA tests done, and when. Based on the latest research, the American Urological Association (AUA) age guidelines are that they do not recommend routine PSA screening for men 70 or older. This is because prostate cancer is normally very slow growing, and if you were to be diagnosed after 70, you will likely die of something else. Then you had the felon in the White House talking about “stage nine” cancer. Is he really so dumb? Guess he is as he tries to prove it nearly every time he opens his mouth. Talk about diminished. 

Now is Biden diminished from what he was years ago? It is clear he is. Should the people around him have tried to hide that in order to have him run again, no! But the-then president’s hiding health issues is nothing new. Wilson was severely impaired and it is said his wife Edith ran the country for his last year in office. The same was said about Nancy Reagan when they hid Reagan’s Alzheimer’s. Kennedy hid his Addison’s disease and other infirmities, and Trump hid how sick he was from COVID, when being helicoptered to the hospital. Is it wrong to hide these things from the American public, yes, but clearly not unusual. Actually, the media is often complicit in this, which many said they were in Biden’s case. Then you have a guy like Jake Tapper who is happy to be complicit, so he can now write a book about it and make loads of money. Very sad.

I think the time has come in the case of Joe Biden, for us to just offer him and his family some love and prayers, and the hope he will be able to manage his cancer and live a long life. Then turn the page and deal with the things that will matter more to the lives of the American people today. 

Those are the things the felon in the White House, and his Nazi sympathizing co-president, along with the MAGA Congress, are trying to do to them. Things like taking away their healthcare, and thereby also causing the closure of some rural hospitals. Things like the mass firings of federal workers, including thousands of veterans. Things like making it harder for our veterans to access their healthcare by cutting services at the Veterans hospitals. Things like increasing costs for groceries, and other items, due to the felon’s ineffective use of tariffs. Things like seeing college costs go up, as foreign students who pay the full fare at most schools, are sent home or denied visas. Things like making it harder to file for social security by closing so many offices, and pretending to lower drug prices, but not really doing it. Things like cutting research looking for cures for cancer, Alzheimer’s, MS, HIV/AIDS, and a host of other diseases, which will hurt people for decades to come. Things like creating havoc in the world, and bowing down to dictators. Things like walking away from our allies and making the world a less safe place for all of us, including abandoning Ukraine, and cozying up to his friend Putin. I always believed Putin has some dirt on him. Trump said Zelenskyy would be responsible for WW III. But it’s Trump who will be, if it happens. Then we must put a focus on the idiot who is secretary of HHS, RFK Jr., and whether he will allow the flu and covid vaccines, being readied for the fall, to be available in a timely manner. Will he continue to disparage all vaccines, and by doing so, cause deaths here, and around the world. Things like abandoning the fight against climate change and thereby screwing the planet and future generations. 

These are the things the American public really needs to know about, and care about. It may have been wrong to hide Biden’s being diminished, but he is no longer in office, and he no longer impacts people’s lives on a daily basis. The felon in the WH does, and that is where the focus must be. 

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Frank Kameny’s legacy lives on

May 21 marks pioneering activist’s 100th birthday

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May 21 would have been Frank Kameny's 100th birthday. (Washington Blade photo by Michael Key)

A first generation American from Queens, N.Y., Kameny was a decorated WWII veteran. With a prodigious 148 I.Q., he earned a Ph.D. in astronomy from Harvard University. In 1957 he was recruited by the Army Map Service, a pioneering agency in space exploration. 

In 1953 in the wake of McCarthyism, President Eisenhower issued Executive Order 10450 that prohibited homosexuals from military or civilian employment. Having nothing to do with workplace conduct, the Army learned that Kameny might be a homosexual. When confronted, he equivocated and was terminated. Unlike then thousands of other homosexuals terminated from government employment, Kameny fought back.

He took on the military and Civil Service Commission including being the first openly gay man to file an appeal about gay rights to the U.S. Supreme Court. He helped co-found and chair the Mattachine Society of Washington, the first gay rights organization in the nation’s capital.

He wrote letters to, among others, FBI Director J. Edgar Hoover. He founded and chaired the Eastern Conference of Homophile Organization, the nation’s first regional gay organization.

In the 1960s homosexuality, even with a consenting adult in the privacy of one’s bedroom was criminal. The police entrapped and extorted gay men. The American Psychiatric Association classified homosexuality as a mental illness. A bar could lose its license if there was more than one homosexual in their establishment. Homosexuals were considered dangerous, deviant and demented.

Kameny coined the phrase “Gay Is Good.” He organized picketing called Annual Reminders each July 4 from 1965 to 1969 at Independence Hall. The picketers were the first to call for gay equality. The 1965 Annual Reminder had 39 activists making it then the largest demonstration for gay rights. In the mid-1960s the country had an estimated 300 gay and lesbian activists.

He published a newsletter that became the Washington Blade, now the nation’s oldest LGBTQ weekly newspaper. Kameny and Barbara Gittings, the mother of the movement that demonstrated for the right to be heard at the 1971 American Psychiatric Association meeting. Their panel at the 1972 meeting with a masked psychiatrist using a pseudonym and voice modulator was so impactful that the APA created a panel to determine if homosexuality as a mental illness was based on science or discrimination. In 1973, that classification was removed.

He advised gays and lesbians who were the subject of discharge from federal government service. He identified test cases and referred them to the ACLU, Lambda Legal and other counsel. Slowly, but surely those cases began a process for LGBTQ equality.

His efforts led D.C. to be the first city to overturn its sodomy criminal laws. He helped found the first national LGBTQ organization, the North American Conference of Homophile Organizations. His efforts laid the groundwork for HRC and National LGBTQ Task Force.

After Stonewall in June 1969, he chaired a meeting of NY, Philadelphia and D.C. activists that authorized and helped organize to help remember Stonewall the first New York Pride Parade. He believed that Stonewall could be the movement’s Boston Tea Party. He marched in that 1970 parade holding a picket emblazoned with “Gay Is Good.”

He was the first out person to run for Congress as the D.C. delegate. Money left over from his campaign was used to fund the first gay rights television commercial. In July 1975, he was the first to be advised by the Civil Service Commission that it would eliminate homosexuality as a basis for not hiring or for firing a federal civilian employee. In 1977, he attended the White House’s first meeting with gays and lesbians.

Kameny died on Oct. 11, 2011, National Coming Out Day. He lived to see marriage equality approved in several states. He attended the signing by President Obama of the repeal of “Don’t Ask, Don’t Tell,” which enabled gays and lesbians to serve openly in the military. Kameny is buried in the Congressional Cemetery. On his tombstone is inscribed “Gay Is Good.” Over 70,000 of his documents are in the Library of Congress and picket signs from the pioneering demonstrations are housed in the Smithsonian Institution.

On May 21 LGBTQ national organizations gather in front of the Supreme Court. One hundred activists will each hold a candle for his 100th birthday. Fifteen national leaders will engage in picketing similar to the 1965 picketing at the White House and Independence Hall. They will honor Frank Kameny; celebrate the 10th anniversary of marriage equality (Obergefell v Hodges, 2015); and push back on those who would attempt to render us invisible, deny our history and undermine our equality. We will remember the nation’s loss when it fired a Harvard Ph.D. in astronomy because of his status as a homosexual. History repeats itself. This month the U.S. Supreme Court allowed the federal government to terminate transgender servicemembers solely because of their sexual orientation. How far we have come. How much farther we have to travel.

Malcolm Lazin is the national chair, Kameny 100. He is the executive director, LGBT History Month and executive producer of three LGBTQ documentaries including Gay Pioneers. He was an adjunct professor of LGBT History and Rights at New College of Florida. www.kameny100.org

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