September #166 : The Importance of Remembering Ryan White - by Shawn Decker

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Table of Contents

Thou Shalt Fear AIDS

Lest We Forget

When to START Drugs?

You Said It

Burn that Belly

In Sync with ZInc

No Butts About It


HIV a Best Seller?

Considering Cannabis

The Importance of Remembering Ryan White

Insult to Injury

World Cup Wrap Up

Back-to-School Books

Angels Redux

Crying Uncle

Fear & Loathing in Illinois

Editor's Letter


Keeping Track

GMHC Treatment Issues- September 2010

Most Popular Lessons

The HIV Life Cycle


Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV

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September 2010

The Importance of Remembering Ryan White

by Shawn Decker

Why the heroic boy from Indiana is more than just the namesake for the Ryan White CARE Act

Twenty years ago, the HIV community lost one of its fiercest allies when Ryan White passed to spirit at the tender age of 18—just a month shy of graduating from high school. In junior high he had been banned from public school when it was discovered he was living with HIV.

But though he never had a chance to don his cap and gown, White more than earned his diploma in the field of HIV/AIDS awareness. By sharing his own experiences with discrimination, he helped bridge the vast gap between fearful ignorance and compassionate understanding about HIV/AIDS. And he did so in an era that was far from conducive to his message.

Today’s president, Barack Obama, has signed legislation that lifts the U.S. travel ban on people living with HIV and that reauthorizes funding for the Ryan White CARE Act. But when White was diagnosed with AIDS in 1984, President Ronald Reagan said very little about a sexually transmitted infection that was affecting the gay community, and when he did, it was cryptic. In 1987, when referencing the need for more government-led prevention efforts, he said: “...when it comes to preventing AIDS, don’t medicine and morality teach the same lessons?”

Fortunately, that same year, 15-year-old Ryan White decided to address the issue with compassion, explaining that HIV/AIDS is a disease that affects not only gay people but also kids, too, and that all people living with HIV—be they gay or not—deserve the same human and health care rights as everyone else.

Like many others (including yours truly) living with hemophilia in the days before the national blood supply was carefully screened, White contracted HIV through tainted blood products. He did not know he was positive until a bout with pneumonia necessitated a partial lung removal. While in the hospital he was diagnosed with AIDS and given six months to live. As if that news wasn’t enough, his family also discovered that their community in Kokomo, Indiana, did not want White to attend the public school where he was a seventh grader.

While White fought to regain his health, attending classes by telephone from home, his mother, Jeanne White, began a battle with school officials in the hopes that when her son was healthy and ready he could once again sit in class with his friends. White’s expulsion from his Indiana school and the ensuing eight-month battle to get him readmitted made the local news and soon after, the national media.

Headlines about discrimination introduced the country to White, who, in response, spoke out publicly about his situation in an attempt to raise awareness about how HIV is and isn’t transmitted. But despite his valiant efforts, White remained the victim of insensitivity and discrimination in his hometown. After he was readmitted to his school, students vandalized his locker with the word “fag,” and he became the target of jokes named after him—Ryan White jokes. Can you imagine being a teenager and having your name be a punch line? Through it all, he held his head high, appearing on talk shows and being beamed into America’s living rooms, his sweet, gentle demeanor reminding many parents of their own kids. He opened hearts as he advocated love and compassion for all people living with HIV—not just for himself. While most of his 15-year-old peers were struggling with the weight of their backpacks, White carried on his shoulder the responsibility of how a nation viewed a life-threatening illness, and how fear and misinformation around HIV led to stigmatization, discrimination and defamation of those living with the virus.

Many A-list celebrities rallied to White’s side, including Elizabeth Taylor, Sir Elton John and Michael Jackson. But when asked about his own stardom, White said that he would trade it in a heartbeat to have HIV permanently removed from his life. Earlier this year, Elton John wrote a public letter to his fallen pal in honor of their friendship and said that he would give away his fame and fortune for one more conversation with White.

As for the conversations the young boy from Indiana had with our country over the course of his half decade in the spotlight, White admitted that one of the toughest aspects of his role was the fact that he had to say the same things over and over again. It was very taxing having to repeatedly explain that he wasn’t a public health risk. It’s ironic that White’s attempts to educate the public ended up negatively influencing his own health, already compromised by HIV in a time when there were no effective treatments.

His influence continued postmortem. Shortly after White’s passing in 1990, President Ronald Reagan—then out of office for two years—wrote a tribute to White that was published in The Washington Post. And Reagan’s successor, President George H.W. Bush, signed the Ryan White CARE Act into law, providing the first and largest federal aid program for people living with HIV in the United States.

White’s legacy lives on in many ways today. Recently it was added to the Children’s Museum of Indianapolis exhibit titled The Power of Children: Making a Difference, which highlights the struggles faced by children. In one room, an old radio plays the kind of music that the universally known Dutch-Jewish teenager Anne Frank listened to with her family while they were forced into hiding for fear of being killed by Nazis. Walk to the next room and you’ll find a typical 1960 elementary school classroom, only you’ll see it through the eyes of Ruby Bridges, who was escorted into her first-grade classroom by federal marshals as one of the first African-American students integrated into public schools.

Then you enter a zone designed to replicate White’s experience. You can open a vandalized school locker door and hear a recording of the disparaging whispers that must have followed him down the hallways. A replica of his bedroom includes items from his actual room, which was preserved by his mother. His teenage refuge shows that what he said was true: He was just like every other straight kid in the 1980s—doing his homework while Alyssa Milano stared down at him from her poster with a subtle smile, her earrings resting upon her shoulder pads. A clear plastic wall prevents museum visitors from jumping on Ryan’s bed as he must have done, and it seems strangely appropriate—an unintentional tip of the hat to the ridiculous precautionary measures people thought were necessary in the days before White helped them understand how HIV is transmitted. “Yeah, Tommy can spend the night with Ryan this weekend,” one can imagine a concerned mom explaining to Mrs. White on a big, rotary phone. “So long as you put up that plastic wall!”

I was so thrilled to see White’s story and the topic of discrimination based on a medical condition highlighted in the museum alongside cases of extreme ethnic and racial prejudice. My hope is that, as parents guide their children through the White display, they will follow up the museum visit by having frank discussions with their kids about how to protect their sexual health. Nearly 30 percent of all new HIV infections in the United States occur in people younger than 30. White would be heartbroken to know that, while the blood supply that infected him is now much safer than it once was, people his age today are still at risk for contracting HIV and other sexually transmitted infections because of a lack of comprehensive sex education in America’s school.

The HIV/AIDS community has done a wonderful job of carrying White’s torch for the past two decades, but eight years of abstinence-only sex education has resulted in a new wave of young people who risk becoming sick and dying, as White did.

I’m thankful Obama has cut funding for most abstinence-only sex education programs and has given the direction that school-based sex ed should focus on preventing teenage pregnancies. But I wish our president’s leadership would extend further and ensure that The Ryan White CARE Act would include more than just funding for people already living with HIV. I wish the CARE Act could fund HIV-specific education that includes teaching children and young people the art of condom negotiations as well as the proper techniques of condom application and removal. This would ensure the greatest protection from that life-saving prophylactic. If parents have a problem with such topics being taught in school, then someone should teach kids these lessons using YouTube or videos embedded on Facebook.

If White were alive today, I wonder how he’d be advocating for HIV issues as someone nearing his 40s. Would he be fighting for AIDS Drug Assistance Program funding, thus preventing people in the United States from dying while waiting for HIV medications? Or would he have thrown his hands up in the air, choosing to move to France or some tropical island retreat?

No, he’d still be in the fight.

It has been 20 years since we lost White, and I am worried that even the HIV/AIDS community may eventually forget about him. As we continue to lose our first generation of fighters and to focus on nurturing and guiding the newly diagnosed—many of whom were born after White passed—it’s critical that the torch lit by Ryan White remains burning brightly. Many of us have benefited (by being recipients of services provided by the Ryan White CARE Act) from his celebrity and sacrifice. We must acknowledge his influence in our country’s strange, sometimes depressing, sometimes inspiring and ever-evolving history with HIV/AIDS. Most important, it’s critical that Ryan White’s name live on as more than the title of a piece of legislation or as a museum exhibition. For if we forget all that Ryan White personally stood for, then we risk losing a hell of a lot more than we’ve ever communally received from the CARE Act named after him.

Search: Ryan White, Hemophilia, Jeanne White, CARE act, Indiana

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  comments 1 - 15 (of 31 total)     next > >>

Carolyn, Pennsville, 2015-08-20 16:43:17
Ryan white taught ME ALOT. Diagnosed at 18 in 1988 THERE WAS SO LITTLE INFORMATION. AS A TEENAGER INFECTED BY SEX ( which if thought about is usually an expression of love I WAS INFECTED BECAUSE OF LOVE)I lived thru a lot what Ryan did. I adored him his tenacity, his strength, his determination to educate rather than hide like so many did in that era. Today.....26 years later how I wish he had the same oppurtunities we all have today. GOOD BLESS THAT BEAUTIFUL YOUNG MAN.xoxo

Kirsten I. (15), New Castle, Indiana, 2014-04-07 15:20:52
I've been reading a lot about AIDs & HIV. My health teacher told me to look up Ryan White. I honestly felt tears running down my face as i read story after story. I couldn't imagine being shunned and talked about like he was. I hope that one day I'll have a hundredth of the bravery and Courage that Ryan did.

nicole eldridge, Anderson, 2013-10-04 08:41:49
his story left me speechless he was a inspiration to me and his story really touched me i will miss him R.I.P RYAN

ryan heldt, evansville, 2012-01-11 11:03:29

Tabitha M., Indianapolis, IN, 2010-12-18 13:28:01
Thank you , Shawn for directing me to this article you so beautifully wrote. Being from PA I never heard of Ryan White until I moved to Indiana in 04 at the age of 19. His story is nothing short of amazing, as is yours. When I saw you featured in Ryans exhibit here at the Childrens Museum I knew I had to contact you. Thank you for continuing Ryans fight. Ill be right here fighting with you.

Reverend Brad, , 2010-10-12 13:08:40
Such a pity he had to die, but his death has helped so many other infected people I have to think his folks take that to heart when they miss him

Tbone, Virginia, 2010-10-04 11:03:58
Having followed Ryans story from the time it broke, as heart breaking as it was, I never thought I'd be further associated with it other than a spectator. Then I tested Poz and without the Ryan White Foundation, I would never be able to afford my meds. You may be gone, but you'll never be forgotten Ryan. Thanks for all the work you did. We all need to keep the torch lit. Advocate and educate.

Brian, Vancouver, Wa, 2010-09-20 12:40:49
Luckily the VA has paid for most of my medical care, even though I did not retire with full benefits, but if it wasn't for the Ryan White Health Care Act my life would be a little tougher. I hope that the rest of my life can yield as great as things as this young man did in his short life. Thank you Ryan - you will not be forgotten....EVER!

MICHELLE, YPSILANTI, 2010-09-11 22:20:25

cassadra, METTER, 2010-09-10 12:29:11

Darlysia, Youngstown, OH, 2010-09-10 10:19:43
Let me start off by saying this touched my heart in so many ways. I cryed when I read this. Parents please take care and nurture your children.. they are the seeds of our future. Its sad to see children suffer from something so tragic. I will keep this act going by educating children on sex education and the consequences. Everyone please be safe. God Bless to you all.

Darlysia, Youngstown, OH, 2010-09-10 10:15:12
Let me first start off saying that this article made me cry. It was the first time I ever read it and was sincerely touched by it. In order to supoort the Ryan Act I will educate children.. "especially children" on sex education. It is truly sad and heartbreaking to have children suffer through something so tragic, due to the lack of knowledge and irresponsibility. Patrents PLEASE educate your children and yourselves. Its all about giving and taking care of the seeds of our future. God Bless

Trish Steen, Kansas City, MO, 2010-09-08 10:52:07
To honor Ryan's memory I do what I can to educate others. I stand up to the stigma we all feel as pozzies. Ryan stood up against it and I refuse to let him down. He deserves at least that much for going the extra mile at such a young age. Through Ryan's story, I find the courage to continue to fight the stigma and will never back down. I hope one day all PLWHA's can stand up and say, I live with a virus, I am not ashamed. Life is too short to give in to ignorance. Peace out!

Trish Steen, Kansas City, MO, 2010-09-08 10:37:56
Great article Shawn! The first time I heard about Ryan was when he passed away on my 25th birthday in 1991, I was in my 2nd year of being poz. As I learned more about Ryan's plight, I was inspired me to become an advocate. I find it sad that today many who are HIV-poz do not know the true meaning of advocacy and what Ryan stood for. Had it not been for his struggles and tenacity, I'm afraid I wouldn't be here today. I hope that one day we will see more responsible sex ed in schools & at home.

ShyLady, Somewhere In Your City, 2010-09-05 02:54:14
Ryan is the reason I continue to be physically and mentally strong every time this disease has me in its grips. I have been a quiet (health and social) HIV+ case for 15 years but my recent conversion to AIDS has me more thankful for Ryan and his mom. I recently disclosed to my (HIV-) children as I go through this illness and all I could think of is Ryan's courage and someone me and my children could relate to. I most definitely owe my health and my family's well being to his honor.

comments 1 - 15 (of 31 total)     next > >>

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