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 15 - 29 (of 30 total)     << < previous next > >>

Sherri Lewis, Los Angeles, 2010-08-29 19:22:07
Thank you Shawn for writing about Ryan White and evoking his memory, his story and his legacy with the childrens museum. I did not know about that. I am certain if Ryan were alive today and healthy he would continue to fight for equality for all living with HIV and treatment advocacy. As someone who was around when Ryan was still alive and also benefited from the Ryan White Care Act as an AIDS Counselor back in those dark days, Ryan's mother comes to mind as the light that stood strong for us

Arland, Seattle - Eastside, 2010-08-28 04:43:27
To you dear Ryan, thank you for all you gave up when it was not popular to do so. My life, my very way i living is perserved and sustained over what you did so many years ago. We all need to stand up, fight the good fight by just talking, sharing our stories, who we are poz and those not who deal with HIV in our lives. Ryan's awareness need to always be humanity's awareness and understanding and so long as we never forget this, many lives can and will be saved. His legacy lives on in all of us.

Chris, Detroit, 2010-08-27 20:07:02
Ryan, you were an Angel sent to all of us, thank's to you I have now been able to use the Ryan White Act for treatment . I remember you and all the horrid stuff you went thru, I was also infected through blood, and it going on 30 years since I have been HIV+ and thanks to you I am doing great. Thank you and your Mother for everything.

Geoff, Melbourne, Australia, 2010-08-27 11:58:35
Thank you for this article in memory of a brave young man...

patrick armstrong, Dallas, 2010-08-26 20:07:23
P.S. Reading through the tears, Thanks for a great article Shawn. May we never forget Ryan White. Thanks again.

patrick, Dallas, 2010-08-26 20:01:18
Thank You Ryan. I myself have benefited from the Ryan White Act. You have touched so many lives and helped so many people you didn't even know. I understand the fear and stigma we live with every day. You were a brave little boy and I thank you for all you accomplished in your short time here on earth. Thank You Ryan. May you finally rest easy now... Free from all the hate and pain that follwed you here.

manuel ponce, southbend,in, 2010-08-26 18:47:23
ty for fighting the race for your son i been hiv poz for 10 years and i been healty since i been talking my meds thow but i been i good heath ty ryan for fighting your fight agains aids im sorry you got it from blood well keep all the fight mom keep in touth with me ok love you manuel ponce from southbend,in

scott4261, Fayetteville, AR, 2010-08-25 07:32:32
Thank you posting this. If it were not for Ryan White, people would still be dying of complications from HIV/AIDS in the United States. The Ryan White Care Act came at a time when we had a window of compassion from an entire congress. If such an act were to be proposed after the Gingrich congress took over to the present day, I'm afraid a lot of us wouldn't be here... I'm so grateful for the life saving treatment from the RWCA.

Jay T, Denver Colorado, 2010-08-24 17:44:09
I'm sure that I have Ryan to thank for my making it to 70 instead of 53 when I became aware of my HIV status. Thank you for reminding us all of his gift to the world.

Kendall, Savannah, 2010-08-24 16:42:14
Ryan and I were just high school teenagers when we met. I miss him so much. If I'd only known back then what he was going through would eventually affect me, I would have held on closer to him. Now I'm HIV Positive. Life is bizarre, isn't it. I'll always love you Ry-man (his nick name).

M. Aber, Ohio, 2010-08-24 16:07:16

Cathy Start, Catskill NY, 2010-08-24 12:03:09
Dear Shawn, I ran out of words in my previous comment- Thank you so much for the wonderful work that you do. I always read POZ! And recommend it to others! And I am sure that your work is making an impact in the lives of many!

Cathy Start, Catskill NY, 2010-08-24 11:59:24
Thank you for a wonderful article about Ryam White, a person who certainly did make a difference in the lives of many. As a Health Educator for a Family Planning Department of a County Public Health Nursing Service I present many HIV/AIDS educational presentations. During every one of the presentations I speak about Ryan White and the discrimination he faced and the courageous way he lived his life to help educate the entire nation. Although I never met Ryan his life has inspired my work.

BN, NY, NY, 2010-08-24 00:31:35
as someone who receives care from the ryan white health center in NYC its absolutely wonderful to know to read this and know who ryan was and what he stood for. thanks for an amazing article

JB, Houston, 2010-08-23 17:53:36
Thank you Shawn for this incredible and touching story. I must admit that Sonyaga is correct. I've been living with HIV for the past 9 years and have been a recipient of RWCA for my medication.....I never knew who Ryan was or his story. Thank you for opening my eyes and educating me even further into something that is apart of my daily life. Keep up the good fight!!

comments 15 - 29 (of 30 total)     << < previous next > >>

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