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Putting their bodies on the line to fight ACA repeal

Members of ADAPT fighting in tradition of ACT UP

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ADAPT, gay news, Washington Bladeā€œThe bruises started appearing this morning and I imagine my arm will be covered in pretty colors over the next few days,ā€ Anita Cameron, 52, a member of the national disability rights group ADAPT, whoā€™s ā€œproudā€ to be a ā€œdisabled Black lesbianā€ recently emailed me.

Cameron, along with other ADAPT members, hetero and LGBTQ, has been protesting the Republican effort to repeal the Affordable Care Act. To her, as is the case with so many who are disabled, elders, low income, LGBTQ ā€” in any way vulnerable ā€” health care isnā€™t a policy issue: Itā€™s a matter of life or death.

Like ACT-UP members during the AIDS epidemic, ADAPT activists have been putting their bodies on the line. Theyā€™ve been engaging in civil disobedience, getting roughed up by the police and arrested to protest the Republicansā€™ devaluation of their lives. As I write, ADAPT members from D.C., Maryland and Louisiana are protesting outside the Republican National Committee headquarters. Iā€™ve just heard that the RNC isnā€™t letting them in.

ADAPT members (many in wheelchairs, others with conditions from learning disabilities to diabetes) and their allies from children to elders have staged sit-ins and protests in Senate offices in more than 20 states from New York to Ohio to Colorado. Last month, 43 ADAPT advocates were arrested when they held a ā€œdie-inā€ to protest the health care bill outside Senate Majority Leader Mitch McConnellā€™s (R-Ken.) Capitol Hill Office.

Why are they willing to literally put their bodies on the line? To be arrested ā€“ to have police drag them out of their wheelchairs? Because the Republican health care bill contains $800 billion in Medicaid cuts. For people with disabilities these cuts would be devastating.

Medicaid enables people with disabilities to have more than the medical care and the medications they need. It provides ā€œbasic home and community services.ā€Ā  This means if you have a disability and need help getting dressed or with other personal care, Medicaid enables you to not only to get the help you need but to live at home in your community ā€“ instead of in an institution. These services would likely be eliminated if the Republican law is passed.

Obamacare expanded Medicaid to include more than 14 million people. If the Republican repeal effort is adopted, millions of people with disabilities ā€“ from severely disabled children to elders ā€“ would lose their Medicaid.

You may think this doesnā€™t matter to the LGBTQ community. But as a visually impaired lesbian, Iā€™m here to tell you that it does. One in five Americans has a disability, according to the U.S. Census Bureau, and weā€™re every color, sexuality and gender on the rainbow.

Cameron was among those arrested when ADAPT protested in U.S. Sen. Rob Portmanā€™s (R-Ohio) office in Columbus. ā€œThe police grabbed me by an arm and leg and dragged me from the building,ā€ she said.

Cameron isnā€™t only blind. She has multiple sclerosis, diabetes and congenital cerebellar ataxia.Ā  ā€œI just got on Medicaid a few days ago, and I am terrified that I will lose it if the Better Care Reconciliation Act [the Senate health care bill] or anything similar to it passes,ā€ Cameron said.

If she loses her Medicaid, ā€œI will be hospitalized and I will be placed in an institution, which will hasten my death,ā€ she said. ā€œThis bill will kill people with disabilities, especially poor folks and seniors, particularly in communities of color and in the LGBTQ community.ā€

Priya Penner, who is queer, has participated in ADAPT protests in Columbus, Ohio and Rochester, N.Y.

ā€œMedicaid means I can have my $35,000 wheelchair, I can attend Syracuse University ā€” that I am able to have a future that includes a career in law and perhaps, children and a family,ā€ Penner emailed the Blade.

Kudos to ADAPT! For some, health care is just political spin or a worry for others. For people with disabilities, itā€™s a personal and frightening reality.

 

Kathi Wolfe, a writer and a poet, is a regular contributor to the Blade.

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Opinions

Advocating for the Queer Community On and Off The Job

One organ donor can save up to eight lives

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Kai Sprando (Photo Courtesy Infinite Legacy)

As a proud trans man, Kai Sprando recognizes the importance of visibility and education in fostering understanding and acceptance of the LGBTQIA+ community. His commitment to spreading awareness and advocating for queer experiences is something he champions on both a personal and professional level.Ā 


In 2019, Kai began working in the organ donation field as it provides a convergence of purpose and opportunity, which he embraced wholeheartedly to make a difference in peopleā€™s lives. Kai works as an Instructional Designer at Infinite Legacy, where he develops educational resources, curriculum and training plans primarily for clinical staff. At Infinite Legacy, he found not just a job, but a community of compassionate individuals who support him in every aspect of his trans journey.

In Kai’s eyes, organ donation is more than a medical procedure; it is a lifeline and second chance for individuals with end stage organ failure. He also sees it as a way for organ donors to continue their legacy of kindness beyond their time on Earth. He is deeply moved by the profound impact that one organ donor has to save up to eight lives. This knowledge fuels Kai’s passion for his work, driving him to encourage others to learn about the transformative power of organ donation.

For Kai, education is key. He believes that the more people know about and understand organ donation, the better equipped they are to make informed decisions and advocate for the cause.

ā€œThe opportunity to make a difference by saving lives as an organ donor is very powerful. When I pass, I want to know that if nothing else, I tried my best to help others. Thatā€™s what life is all about to meā€¦finding ways to make the hard things in life a little less hard, one act of kindness at a time.ā€ said Kai.

With his background in teaching and his viewpoint as a trans man, Kai has been invited to and spoken at several national organ donation and transplantation conferences providing insight and perspective on what it means to be trans and queer, allowing his peers the ability to be more effective and caring while interacting with LGBTQIA+ people and their families. 

Kai is passionate about advocating for marginalized communities and through his openness, vulnerability and willingness to share his lived experiences, Kai contributes to positive change in healthcare, particularly around gender and sexuality representation.

As he continues to advocate for change and build a better infrastructure around LGBTQIA+ needs and representation, Kai remains hopeful for the future. He has seen the important shifts and positive changes in healthcare in recent years and is determined to keep pushing for progress, one conversation at a time.

Everyone can register to be an organ donor. To learn more, visit infinitelegacy.org

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Proposed Medicaid rule may hurt people with HIV

A freeze on drug development would be a crushing blow

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We’re fortunate to exist in a world where it’s possible to live for a long time with HIV. Medical science has made astounding progress since the 1980s, when a positive diagnosis was considered a death sentence. Queer activism helped bring about the shifts in policy and attitude that made this success possible.

But our job isn’t over yet.

HIV isn’t spread evenly across the United States. In urban areas with high poverty, it’s as prevalent as it is in low-income countries with generalized HIV epidemics, like Ethiopia and Burundi. This means that almost 40% of Americans with HIV get their health coverage through Medicaid, the government insurance plan for low-income people. And recently proposed changes to the program could halt future progress toward finding a cure.

Under the current Medicaid Drug Rebate Program, Medicaid receives a sizeable manufacturer rebate on brand-name drugs ā€” calculated in part based on either 23.1% off the average price of the drug, or the best price available to another purchaser if that discount is higher.

But now, the Centers for Medicare & Medicaid Services (CMS), the federal agency that runs Medicaid, has proposed a new rule. It would require calculating a medicine’s best price by stacking the rebates and discounts on a single unit of drug that a manufacturer provides to different eligible purchasers.

Due to the interplay with other recent changes to Medicaid, in some cases, the total markdown could exceed 100% of the average price of the drug ā€” meaning manufacturers would be forced to effectively sell the medications at a loss to Medicaid.

This could mean trouble for drugs whose largest market is Medicaid, like those that treat HIV. If manufacturers and their investors decide that it’s no longer financially viable to make drugs that primarily serve disadvantaged patients, then those medications might not be developed at all.

That’s concerning, given that many groundbreaking HIV therapies stemmed from private sector research and development. And with research inching ever closer to a cure, a freeze on HIV drug development would be a crushing blow to those of us living with the disease.

The proposed rule change also threatens the search for a cure with policies that target cell and gene therapies, areas in which scientists have recently made promising HIV-related breakthroughs. When cell and gene therapies come to market after years of research, they can often have high up-front costs ā€” sometimes more than $1 million per patient. That’s in part because the field is so cutting edge and the therapies deliver long-term benefits, and in part because research failures in drug development are far more common than successes.

One CMS policy change would require manufacturers to report their research and development costs for specific high-price medicines to the agency. The government could make such information public, and use it to challenge drug prices. In addition, the rule proposed to specifically target accelerated approval drugs, a pathway that has allowed many patients with HIV/AIDS early access to lifesaving treatments.

The problem is that for every drug candidate in clinical trials that succeeds, nine fail. Sometimes they fail after years of research and hundreds of millions of dollars invested. To keep  the research money flowing, that one success needs to make up for the cost of the nine that washed out.

If Medicaid drives drug mandatory rebates so low that companies can’t recoup their investments, it will discourage them from pursuing the most cutting-edge avenues of research ā€” and put some of them out of business. Biotech investors will abandon gene therapy and seek out more stable markets, and HIV research will suffer. Ultimately, patients living with HIV who rely on Medicaid will miss out on potential cures that never get developed. They may also lack access to therapies that do get created, given that the companies behind them could pull out of the Medicaid market altogether.

Forty percent of Americans living with HIV are Black, and 63% are gay and bisexual men.

As a queer Black man with HIV myself, I know all too well how devastating it is to receive that diagnosis, especially when you’re underinsured and living in poverty. But I also know that effective treatment can vastly improve quality of life. Without the sacrifices and the activism of those who came before us, HIV might still be a death sentence.

It’s up to us to continue the fight now. Our community deserves a shot at a cure. CMS officials urgently need to reverse course on this disastrous proposal. And if they fail to do so, it’s incumbent on HIV activists to push for the federal government to adopt policies that support affordable HIV treatments and research funding.

Guy Anthony is the president and CEO of Black, Gifted & Whole.

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BookMen DC: Still going strong at 25

Celebrating the longest-running LGBTQ literary group in the area

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On May 11, 1999, what was originally known as the Potomac Gay Menā€™s Book Group convened for its first meeting. A lot has changed over the ensuing quarter-century, starting with our name. But our identity remains true to the description on our blog: ā€œan informal group of men who are interested in gay literature (both fiction and non-fiction).ā€

Our founder, Bill Malone, worked at the Whitman-Walker Clinic and started the group using donations of remainder books from a wholesaler in New York. Soon after that, members decided to get their own books, and began purchasing them through Lambda Rising, which offered a discount for such orders until it closed in 2010. The group later renamed itself BoysnBooks, and then became BookMen DC in 2007, which is also when we started our blog

Following Billā€™s tenure, Tom Wischer, Greg Farber and Tim Walton (who set up our blog) have served as our facilitators. I succeeded Tim in that role in 2009, and am grateful to him and all my predecessors for laying such a solid foundation for our group. 

Twenty-five years after our founding, we are the longest-running LGBTQ literary group in the DMV. So far, we have discussed nearly 400 books, ranging from classics like Platoā€™s Symposium to graphic novels, gay history and memoirs, and novels by James Baldwin, Michael Cunningham, E.M. Forster and Edmund Whiteā€”to name just a few of the many authors and genres weā€™ve explored.

Currently, we have more than 120 names on our mailing list, of whom about a quarter attend meetings at least occasionally. (Average attendance at our meetings is about 10.) Our members variously consider themselves gay, queer, bisexual, or transgender, and those varying perspectives enhance our discussions. I would be remiss if I didnā€™t acknowledge that, like many LGBTQ organizations, we are not nearly as diverse as I wish we were. Although we do have young members and people of color within our ranks, we are predominantly white and middle-aged or older. We have tried various forms of outreach to further diversify our membership, and will keep working on that.

How has BookMen DC not just survived, but thrived, when so many other book clubs and LGBTQ groups have foundered? I would identify several factors.

First and foremost, we are welcoming. We have no minimum attendance requirements and charge no dues. And we expressly encourage members to join us at meetings even if they havenā€™t finished the selection weā€™re discussing.

We are also collaborative. Each fall, members nominate titles for the next yearā€™s reading list; I then compile those suggestions into a list for members to weigh in on, and the results of that vote determine what we will read. 

Finally, we are flexible and adaptable. Over the years, we have met in locations all over the District. Currently, we meet on the first Wednesday of each month at the Cleveland Park Library (3310 Connecticut Ave. NW) from 6:30-7:30 p.m. to discuss entire books; afterward, those interested go to dinner at a neighborhood restaurant.

When the pandemic struck four years ago, we took a break for a couple of months before moving operations online. (Thank God for Zoom!) Even after the venues where weā€™d been meeting reopened, we have continued to meet virtually on the third Wednesday of each month, from 7-8 p.m. During those Zoom sessions, we discuss sections of anthologies of poetry and short stories, as well as short standalone works (e.g.,  plays and novellas).

If you enjoy LGBTQ literature and would like to try us out, visit our blog: https://bookmendc.blogspot.com/ and click the link to email me. Weā€™d love to meet you!

Steven Alan Honley, a semi-retired musician, editor, and writer, has been a member of BookMen DC since 2000 and its facilitator since 2009.

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