If you were born after 1975, your memories of Ryan White, what he faced, did, and represented may be hazy at best. Since his name has come up lately in regards to the rules of the ACA it seemed a good time to look back and see how far we have come since Ryan was diagnosed with AIDS in 1984.
In December, 1984, few people were familiar with AIDS as anything other than a disease of gay men. Ryan White, a fourteen year-old patient with Hemophilia A, was diagnosed with AIDS in December of 1984, when he was hospitalized for lung surgery. Although it is unknown exactly when he contracted the virus, it is likely that the source of his infection was through a transfusion of Factor VIII, a blood product created from the pooled plasma of non-hemophiliacs and, in those days, commonly used to treat patients with Hemophilia A.
After he started feeling better, Ryan wanted to return to school in Kokomo, Indiana, but was not allowed to do so, after some parents and, shamefully, some teachers, protested his presence. The family sued, the court ruled in Ryan's favor and ordered the school to re-admit him. Although admitted back into the school, the cruelty and ostracism continued, culminating in a bullet being fired into the Whites' home. The family moved to Cicero, Indiana, where an educational program led by one of the students, Jill Stuart, made Ryan feel welcome. He attended high school, made friends, got a part time job, and even had a date for his senior prom.
Beginning with the trial, Ryan reluctantly became a media figure, often saying he would trade the fame gladly to be rid of the disease. By his mere existence and willingness to fight for his education and the right to be treated as a normal human being, he forced the American people to examine their attitudes about HIV/AIDS. He disliked being referred to as an "innocent victim" because he felt that suggested that others were somehow "guilty victims."
White participated in numerous public benefits for children with AIDS. Many celebrities appeared with White, starting during his trial and continuing for the rest of his life, to help publicly destigmatize socializing with people with AIDS. Singers John Cougar Mellencamp, Elton John and Michael Jackson, actor Matt Frewer, diver Greg Louganis, President Ronald Reagan and Nancy Reagan, Surgeon General Dr. C. Everett Koop, Indiana University basketball coach Bobby Knight and basketball player Kareem Abdul-Jabbar all befriended White.He passed away on April 8, 1990 at the age of 18.
In a 1993 interview, prominent gay rights and AIDS activist Larry Kramer said, "I think little Ryan White probably did more to change the face of this illness and to move people than anyone. And he continues to be a presence through his mom, Jeanne White."
His impact did not end with his death and the federal program, created as a payor of last resort for HIV/AIDS patients, was named in his honor. The Ryan White CARE (Comprehensive AIDS Resources Emergency) Act, now known as the Ryan White HIV/AIDS Program, is not a charity. It is a federal program created during a time in which we believed that government could act as a force for good. Yes, boys and girls, there was such a time. Follow me below the fold for a glimpse of that bygone era.
Not all things in that era were good and there was quite a bit that we were glad to see go. There was no widespread access to the internet in those days, there was no Fox News, so truth actually had a chance to be heard.
Early in 1986, I had to research the AIDS virus the old fashioned way: in a library with books (not much info there at that point), magazines, newspapers and microfilm. But it was not hard to learn enough to know that the fears of the the folks in Kokomo were completely unfounded. And to suspect the motives of those who called for a quarantine of AIDS patients.
There were people who seriously called for such a quarantine. Easy to forget today, but it was a big deal at the time. The LaRouche crazies got it on the ballot in California, twice (defeated both times, showing that even in California we occasionally surrender to reason). Mike Huckabee was also in favor of locking them all up:
"It is difficult to understand the public policy towards AIDS. It is the first time in the history of civilization in which the carriers of a genuine plague have not been isolated from the general population, and in which this deadly disease for which there is no cure is being treated as a civil rights issue instead of the true health crisis it represents."A 1985 poll by the Los Angeles Times revealed that over half of those surveyed, 51%, wanted a quarantine for those found to have AIDS. Just under half, 48% wanted ID cards for those who carried the antibodies. The fringe, at 15%, wanted tattoos. (I am not going to go Godwin here, but you can see how easy it would be.)
A whopping 77% wanted to criminalize blood donations by homosexuals or others at "high risk for AIDS." For that matter, 51% wanted to make sex a crime if engaged in by someone with AIDS.
(If my memory serves me correctly, it seems that the folks who were cheering a concentration camp for gays are the same ones who swore that FEMA was setting up camps for their followers after 2009. Little projection there, ya' think?.)
It was a heartbreakingly bad time to be gay. Too many men were dying. With little to no legal protection against job or housing discrimination, and an administration determined to ignore the disease that was ravaging the community, ACT UP sprang into being in March of 1987. It changed everything.
That was 25 years ago this month, and so much has happened since then, all of it stemming from that one electric moment. ACT UP revolutionized everything from the way drugs are researched to the way doctors interact with patients. Ultimately it played a key role in catalyzing the development of the drugs that since 1996 have helped keep patients alive for a near-normal life span. Act Up also redrew the blueprint for activism in a media-saturated world, providing inspiration for actions like Occupy Wall Street.ACT UP was radical. Its actions were shocking. And effective. Unlike right-wing terrorists who assembled at a ranch in Nevada with their pop guns, these men and women acted in defiance of authority without so much as a pocket knife. That is a demonstration of courage that the gun-toters can only dream of.
New York Magazine
March 25, 2012
But I don't really want to get side-tracked (although it is hard not to, I mean, once they even closed down the FDA! Just an amazing group of activists). The main point is that in the 1980s, as a nation, we were ill-informed and we treated AIDS patients with unbelievable cruelty. That has changed in a big way. Not only are there now therapies that can extend a patient's lifetime to near normal lengths, but we no longer see it as the act of a wrathful God against those people who would dare to love, with the possible exception, since Fred Phelps is dead, of Pat Robertson. And we have a federal program in place to ensure that they get the medical care and assistance that they need.
How that legislation came into being is another example of how different our world has become.
Support for passage was broad, but it did not come without a struggle, especially when the bills came to the floor. A few members opposed increasing the Federal investment in HIV/AIDS, arguing that other diseases affected more people and at greater cost to the Nation. Most of the debate, however, focused on hot-button topics—-partner notification, blood donation, and providing bleach to drug users to clean their needles. The final amendments passed were largely compromises written or supported by the bills’ authors.Notice that none of the opposition was based on a refusal to allow the majority party its right to govern. The objections were reasonable, meaning that reasonable people could reach a compromise. They did. Even Jesse Helms, who adamantly opposed the bill, knew that it would pass. No filibuster was even hinted at, nor did any delaying tactics occur.
A Living History, HRSA
The Senate Bill, S. 2240 was brought to the floor on May 11, 1990. After two days of debate and amendments, the bill was passed on May 16th with 95 Senators voting Aye and 4 voting Nay.
A month later, on June 13, 1990, the House passed their bill, H.R. 4785 with 408 Ayes to 14 Nays.
You may want to take a moment and read those last two sentences again. Savor them this time. I will wait.
Congress acted on behalf of the American people. They debated, amended and passed a bill. Just like the founders envisioned. Yes, boys and girls, we once had a democracy that worked.
Really, we did.
From the Health & Human Services website:
The Ryan White HIV/AIDS Program is the largest Federal program focused exclusively on HIV/AIDS care. The program is for individuals living with HIV/AIDS who have no health insurance (public or private), have insufficient health care coverage, or lack financial resources to get the care they need for their HIV disease. As such, the Ryan White HIV/AIDS Program fills gaps in care not covered by other funding sources.It was a time when ignorance was not a vocation and could be cured with the simple application of knowledge. When facts were objective things that all agreed were real. When the business of television was informing the public instead of persuading it. It was a time when our government functioned, when well meaning men and women served the interests of the nation and not the politics of the super wealthy.
The legislation is called the Ryan White HIV/AIDS Treatment Extension Act of 2009 (Public Law 111-87, October 30, 2009). The legislation was first enacted in 1990 as the Ryan White CARE (Comprehensive AIDS Resources Emergency) Act. It has been amended and reauthorized four times: in 1996, 2000, 2006, and 2009. The Ryan White legislation has been adjusted with each reauthorization to accommodate new and emerging needs, such as an increased emphasis on funding of core medical services and changes in funding formulas.
It was such a time.
Since then, we have come a very long way. We now recognize that HIV/AIDS is a medical, not a moral, issue. We have come so far from those days of the 1980s, that today, half of all Americans believe that marriage equality is guaranteed by the Constitution.
Politically, we have also travelled a great distance. Sadly, it has been in the wrong direction. There was a time when we had leaders who fought for ideals that weren't just progressive, they were American. Today we have too many office holders who fight for camera time instead. Who are not interested in winning a legislative victory, but only in insuring a loss for the other side. Because they don't believe in government, they have done all they can to destroy it.
Time it was,
And what a time it was
It was . . .
A time of innocence
A time of confidences
Long ago . . . it must be . . .
I have a photograph
Preserve your memories
They’re all that’s left you
Simon & Garfunkel
While googling all of this stuff, I came across the news that HBO will broadcast Normal Heart starring Mark Ruffalo, Matt Bomer, Taylor Kitsch, Jim Parsons and Julia Roberts. Believing that there is no such thing as coincidence I have included the information and the trailer.
Directed by Emmy® winner Ryan Murphy and written by Academy Award® nominee Larry Kramer, adapting his groundbreaking Tony Award-winning play of the same name, the drama tells the story of the onset of the HIV-AIDS crisis in New York City in the early 1980s, taking an unflinching look at the nation’s sexual politics as gay activists and their allies in the medical community fight to expose the truth about the burgeoning epidemic to a city and nation in denial. THE NORMAL HEART will debut on HBO on May 25 at 9 p.m.
Ruffalo portrays Ned Weeks, who witnesses first-hand a mysterious disease that has begun to claim the lives of many in his gay community and starts to seek answers. Matt Bomer plays Felix Turner, a reporter who becomes Ned’s lover. Taylor Kitsch plays Bruce Niles, a closeted investment banker who becomes a prominent AIDS activist. Jim Parsons plays gay activist Tommy Boatwright, reprising his role from the 2011 Broadway revival. Roberts plays physician Dr. Emma Brookner, a survivor of childhood polio who treats several of the earliest victims of HIV-AIDS.
Kramer’s play debuted at New York’s Public Theatre in 1985 and was revived in Los Angeles and London, and off-Broadway. The 2011 Broadway revival garnered five Tony nominations, winning for Best Revival, Best Featured Actor and Best Featured Actress.