HIV Cures Come At A Price

Also published on Bilerico.com

Today, amfAR grantee Dr. Timothy Henrich announced two HIV-positive patients who have undetectable levels of HIV after undergoing stem-cell transplants at the 7th annual International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention in Kuala Lumpur, Malaysia.

Money

Money (Photo credit: 401(K) 2013)

We’ve had some excellent news about the curing of HIV-infected people in the past year. But it comes at a price.

It’s important to note that the individuals involved received intensive care and went through extreme discomfort in order to eradicate the virus from their bodies. It’s not something that we’ll be able to replicate for the general population anytime soon.

And I think we need to remember that people are still dying of HIV-related causes every day- thousands of people. And new infections aren’t really slowing down- even in the First World where there is convenient access to safe sex supplies. There’s still a disconnect. There’s still ignorance and apathy out there.

It’s still good news however.

From amFAR:

The patients had been on long-term antiretroviral therapy for HIV when they developed lymphoma. To treat the cancer, the patients underwent reduced intensity chemotherapy followed by stem-cell transplants. Since the transplants, Dr. Henrich has been unable to find any evidence of HIV infection.

Dr. Henrich was awarded a grant through the amfAR Research Consortium on HIV Eradication (ARCHE) after presenting preliminary findings on these patients at the International AIDS Conference last July. With support from amfAR, he conducted a clinical study in which his research team withdrew the patients’ antiretroviral therapy and performed several sophisticated assays looking for signs of viral rebound in blood and other tissues. One patient has been off treatment with no detectable virus for approximately 15 weeks, and the second patient for seven weeks, with similar results. However, it is too soon to draw any definitive long-term conclusions.

It is also unclear how long viral rebound might take in a patient whose viral reservoirs have been dramatically depleted, but not eradicated. According to amfAR/ARCHE grantee Dr.Robert Siciliano of Johns Hopkins University, it may take over a year. Previously a patient in a study by the National Institutes of Health had gone 50 days after treatment withdrawal without viral rebound. Dr. Henrich’s patients are at or beyond this threshold, and more definitive answers will emerge as these patients continue to be closely monitored.

“These findings clearly provide important new information that might well alter the current thinking about HIV and gene therapy,” said amfAR CEO Kevin Robert Frost. “While stem-cell transplantation is not a viable option for people with HIV on a broad scale because of its costs and complexity, these new cases could lead us to new approaches to treating, and ultimately even eradicating, HIV.”

The first person to be cured of HIV, Timothy Brown (“the Berlin patient”), also underwent a stem-cell transplant to treat his leukemia. These new cases differ significantly, however, in that the stem-cell donors lacked the genetic mutation (CCR5 delta32) that renders a person virtually resistant to HIV infection. Nor did Dr. Henrich’s patients undergo the intensive chemotherapy or total body irradiation that preceded Timothy Brown’s stem-cell transplant.

“Dr. Henrich is charting new territory in HIV eradication research,” said amfAR Vice President and Director of Research Dr. Rowena Johnston. “Whatever the outcome, we will have learned more about what it will take to cure HIV. We believe amfAR’s continued investments in HIV cure-based research are beginning to show real results and will ultimately lead us to a cure in our lifetime.”

I still can’t help but think we’ve not done our best in response to this epidemic- especially in the last decade. I wonder if, as a community, we settled for simply not dying as a substitute for true health.

If so, what does that say about our self-esteem, self-care and community spirit? Have we lost interest in each other beyond the obvious?

That’s a heavy price to pay.

Truth In The Face Of Ignorance

peace love joy

peace love joy (Photo credit: Leonard John Matthews)

Back in March, I wrote a piece about the Pope speaking to American bishops about the need for a culture war about marriage equality- and we got one. The Catholic Church was the largest single contributor (through the Bishop’s Conference, the Knights of Columbus and the National Organization For Marriage) against marriage equality initiatives in four states.

They lost.

Kind of makes you wonder what kind of help those millions of dollars would have given the poor if they hadn’t been so horribly directed against love.

Anyway, I ended that essay with with an open letter to LGBTIQ persons who live every day in the face of moral attack, physical violence and angry, ignorant, powerful people. We may have come a long way this year, but we’re not there yet.

So- if I may be so bold- I’d like to reprint the letter as a reminder that we need to find inspiration in ourselves. We need to remember that in the face of ignorance, we must continually speak the quiet, powerful truth of purpose and experience.

And I need to be reminded just as much as anybody else.

To my LGBTIQ family,

Love toward yourself remains a fundamental principle of morality. Therefore it is important and necessary to insist on respect for your own right to life. I believe you were created to fill a very important place in this world- a place often dramatically misunderstood and opposed by people out of ignorance and fear.

It is crucial that you understand that you are not alone- there are millions of people who want to understand you and accept you and who will love you. You have the right to be understood- and you have the right to love and be loved in the ways you feel are most faithful to your created nature.

You have the right to live free from fear of attack and violence. You have the right to defend yourself against ignorant attacks on your dignity, happiness and self-respect. You have the right to fulfill your potential and to follow your heart and mind and soul and dreams to the best of your ability. Despite ignorance, despite persecution, despite fear and power and hate.

I believe that we are all beloved by the God of our understanding. I believe that we are valuable in being beloved. And that value is not diminished, even in the face of anger, fear and ignorance. Even in the face of religious belief which would deny us that value.

We are a courageous, wonderful people, with visions of love and acceptance and equality and happiness that I believe are deeply important to the future of the world.

I beg you, don’t let go of these visions- no matter how strongly others try to pull them away from you. They are your birthright.

They are the key hope to a world filled with peace.

Amen.

Update: Homophobic Attack In Missoula

The Missoulian, KPAX and Towleroad are all reporting on the Missoula beating of a young gay man on his 22nd birthday.

Wipeout Homophobia’s Facebook page posted photos earlier today- I can’t bear to put them up here- they’re upsetting and I don’t think I need to make the point that there are people out there who think it’s okay to beat up people they see as queer- as ‘fags’, as ‘dykes’ as ‘trannies’, as, well, whatever.

There are people everywhere who think it’s okay to do that- not just in Montana.

After the most successful Pride Celebration in Montana history, when more supporters than ever showed up for equality and to support their LGBTIQ brothers and sisters, it’s very hard to see the reality of hate and ignorance that we all have to face every day in the U.S.

It’s not just Montana. It’s not “just” anywhere. It’s everywhere.

And that’s why we can’t be silent. That’s why we need to keep standing up in the face of bullying and violence. It goes against the values of the Montana I know and love. And sadly, bullying and violence still seems to be promoted as a value in some Montana circles (yeah I’m talking about you, Tim Ravndal).

But I still believe more people have our best interest at heart than don’t. The ignoramuses just have the advantage of jumping out of dark alleys.

So, again- please- be careful out there.

Update: Police are now saying that this investigation has taken a turn- from the Missoulian:

Missoula police are examining a videotape that purports to show a young gay man injuring his face while doing a backflip.

The man reported to police that he’d been beaten up outside the Missoula Club early Sunday morning, allegedly because of his sexual orientation.

But the video shows him doing a backflip off a curb on North Higgins Avenue and smashing his face on the sidewalk as he lands.

“Until we finish the investigation, we won’t know the entire story, but it has certainly been a major development in the case,” said Missoula Police Chief Mark Muir.

I’m making no further comments until we know more.

But what I said above applies nonetheless.

Utah Legislature Avoids Messy Facts, Science; Advances Bill Dropping Sex Ed

Utah State Capitol

Image via Wikipedia

Sadly, but perhaps unsurprisingly, Utah’s Legislature is moving forward on HB363, a piece of legislation that would effectively end any comprehensive sexual education in Utah schools. The Salt Lake City Weekly:

House Bill 363 sponsor Rep. Bill Wright, R-Holden, argued that teaching contraception only encouraged immoral behavior, so his bill would allow for schools to teach abstinence-only or to opt out of teaching sexual education entirely. Wright said teaching sexuality wasn’t a priority in education. “This is not like all our students are going to die if they don’t learn promiscuous behavior,” Wright said. (emphasis mine)

Yes. That’s what he said.

In an editorial for the same paper, Rebecca Walsh opines

Anti-sex-education crusader Bill Wright would have loved me.

In seventh grade, I was just like the tiny blond granddaughter the Republican legislator from Holden hauled up to Capitol Hill last week as a prop for his legislative campaign, House Bill 363. I was the pristine product of a sex-free Utah public education and Mormon parents—innocent, naïve, clueless.

Then one day, I overheard a boy in the hall at school crudely describing the mechanics of copulation. In an instant, Troy rendered irrelevant my parents’ denial that we needed to have the talk and showed me the limits of my teachers’ silence. It was the end of innocence, delivered by a pimply teenage boy.

And that’s the problem with Wright’s (and my parents’) plan: It’s not rooted in real life.

American teens are shockingly misinformed about their bodies, birth control and pregnancy—Utah kids even more so.

A 2008 study by Self magazine and the National Campaign to Prevent Teen and Unplanned Pregnancy found many young adults had “magical thinking” when it comes to sex—unsure of how often to take birth-control pills, unfamiliar with 28-day fertility cycles.

And that was among young adults with some level of sex education. In the information vacuum created by Utah lawmakers, sex ed ranges from abstinence-only programs in four school districts—Alpine, Canyons, Jordan and Nebo—to oblique references from frightened biology and health teachers in others.

When are we going to wake up to science and truth? High school students are having sex. Right now. Probably without condoms, birth control, and in Utah, without rudimentary knowledge of biological processes.

While this “teaching kids about sex causes them to have more sex” nonsense avoids the reality of the situation: as a society, we are ridiculously stupid about sex.

Ridiculously.

And if this bill gets through, that ridiculousness will be enshrined in Utah law.

World AIDS Day in Montana

On World AIDS Day we should not only remember the lives we’ve lost and think of those who are continuing to battle this disease, but we should also remember the challenges we’ve overcome and move forward towards the challenges ahead.
Here in Montana, we have a lot of challenges in regard to HIV/AIDS, but it’s important to me to highlight something some people may not pay particular attention to; something that drives me crazy every time I think about it;  the particular challenge of Congressman Dennis Rehberg.
Congressman Rehberg has a long history of furthering stigma and reducing access to treatment for people with HIV.
When he was our Lt.Governor, Congressman Rehberg argued against providing treatment for people with HIV, saying, “The problem with AIDS is, you get, you die, so why are we spending any money on people that get it...”
And no apology.
I’ve documented more recently that Congressman Rehberg hasn’t changed his thoughts on fighting this disease. In fact, he wants to eviscerate the budget. His recently released budget bill (in which he solicited no input from Montanans) would cut nearly $33 million from the CDC to fight the spread of HIV, Hep-C and other STDs. Obviously, Congressman Rehberg doesn’t realize that stopping the spread of these diseases now will save us millions of dollars in health care costs down the road- and potentially save the lives of millions of Americans and hundreds of Montanans.
He’s too busy pandering to the Tea Party.
I attended the Governor’s World AIDS Day awards today and I heard the award recipients and the many inspirational people talk about the theme of this year’s World AIDS Day, “Getting to Zero: Zero Infections, Zero Discrimination, Zero AIDS-Related Deaths.” It struck me as I was listening to the speeches, that, over his decades as a politician, Denny Rehberg has done an incredible disservice  to his hundreds of constituents living with HIV/AIDS- and their families. His ignorance and inability to separate HIV from stigma and shame is repugnant- and the exact opposite of the hope, selflessness, dedication and service those people in the Capitol Rotunda represented today.
Let’s make sure that by next year’s World AIDS Day Congressman Rehberg won’t be able to work against our efforts to stop the spread of this disease and the stigma associated with it.

The “Right” Responds To MT ACLU Lawsuit

The mouthpiece of Denny Rehberg, Steve Daines and Corey Stapleton, Treasure State Politics, has reacted to the ACLU appeal for same sex domestic partnerships- and, as expected, it ain’t pretty.

In fact, it’s disgusting. Excerpt:

If the ACLU wins the suit, the legislature will be forced to create a law that ensures gay and lesbian couples are given the same rights as traditional couples. This potentially means a civil union, but to be truly treated the same they would have to be recognized as married individuals, clearly not what the people of Montana decided.

Moreover it opens the legal precedent to further compromise the sanctity of marriage in Montana. If being treated the same under the law means we must recognize gay and lesbian couples, we also must recognize polygamist marriages. If a church is willing to marry traditional couples in Montana, it could be required to marry gay and lesbian couples. But these are reasons Montanans already settled this issue in 2004.

Every Montanan has the same rights, as the constitution requires. I have the right to marry a member of the opposite sex, just as these couples do; and I have the right to be in a relationship, but not to marry, someone of the same sex, just as these couples do. There is no violation of equal treatment under the law. (emphases mine)

Gay and lesbian couples are openly- brazenly- derided as undeserving of equal rights and compared to polygamists. This is an ignorant, ridiculous piece, obviously written from a bigoted and fearful perspective. The writer  has inflamed the fears and prejudice existing in good people who may not know better- or who are entrenched in their fundamentalist beliefs.

That’s not only irresponsible, it’s despicable.

I am no threat to anyone’s marriage. My desire to commit to my partner for life is being dismissed as fundamentally invalid by people who have no possible right or understanding of my life, my biology, my spirituality, my thoughts and my emotions.

Moreover, they don’t want to even try.

They just want to frighten- and keep us unmarried, unrecognized, marginalized, sleazy and freakish in the minds of their constituents.

It’s at the root of all the anti-gay bigotry in the state. A spade is a spade.

I just wish they had the balls to admit it.

 

 

Proposed DSM-5 Changes: Derogatory Labeling & Pathologizing The Identity Of Trans Persons

(reprinted from GID Reform Weblog)

by Kelley Winters, Ph.D.
GID Reform Advocates
http://www.gidreform.org
kelley@gidreform.org

On May 5th, the American Psychiatric Association (APA) released a second round of proposed diagnostic criteria for the 5th Edition of The Diagnostic and Statistical Manual of Mental Disorders (DSM-5). These include two diagnostic categories that impact the trans communities, Gender Dysphoria (formerly Gender Identity Disorder, or GID) and Transvestic Disorder (Formerly Transvestic Fetishism). While GID has received a great deal of attention in the press and from GLBTQ advocates, the second Transvestic category is too often overlooked. This is unfortunate, because the Transvestic Disorder diagnosis is designed to punish social and sexual gender nonconformity and enforce binary stereotypes of assigned birth sex. It plays no role in enabling access to medical transition care, for those who need it, and is frequently cited when care is denied (Winters 2010). I urge all trans community members, friends, care providers and allies to call for the removal of this punitive and scientifically unfounded diagnosis from the DSM-5. The current period for public comment to the APA ends June 15.

Like its predecessor, Transvestic Fetishism, in the current DSM, Transvestic Disorder is authored by Dr. Ray Blanchard, of the Toronto Centre for Addiction and Mental Health (CAMH, formerly known as the Clarke Institute). Blanchard has drawn outrage from the transcommunity for his defamatory theory of autogynephilia, asserting that all transsexual women who are not exclusively attracted to males are motivated to transition by self-obsessed sexual fetishism (Winters 2008A). He is canonizing this harmful stereotype of transsexual women in the DSM-5 by adding an autogynephilia specifier to the Transvestic Fetishism diagnosis (APA 2011) . Worse yet, Blanchard has broadly expanded the diagnosis to implicate gender nonconforming people of all sexes and all sexual orientations, even inventing an autoandrophilia specifier to smear transsexual men. Most recently, he has added an “In Remission” specifier to preclude the possibility of exit from diagnosis. Like a roach motel, there may be no way out of the Transvestic Disorder diagnosis, once ensnared.

What You Can Do Now

  1. Go to the APA DSM-5 web site (APA 2011), click on “register now,” create a user account and enter your statement in the box. The deadline for this second period of public comment is June 15.
  2. Sign the Petition to Remove Transvestic Disorder from the DSM-5 (IFGE 2010), sponsored by the International Foundation for Gender Education.
  3. Demand that your local, national and international GLBTQ nonprofit organizations issue public statements calling for the removal of this defamatory Transvestic Disorder category from the DSM-5. Very few have so far.
  4. Spread the word to your network, friends and allies.

For more information, see GID Reform Advocates (Winters, 2010)