Ryan White - My Own Story (35 page)

AZT, which Ryan took for the last two years of his life, is one of the very few drugs for AIDS patients. AZT is not new; it was developed as a cancer drug but did not work well. However, it
does
effectively slow reproduction of the AIDS virus in the body, so AZT helps patients live longer. If you test positive for the virus and have no symptoms, yet tests show that your immune system is being weakened, your doctor may have you take AZT as preventive medicine.

Unfortunately, AZT has some unwanted side effects: It can damage bone marrow, leading to anemia, and also irritate muscles. AZT’s side effects are sometimes bad enough that half the people who need this drug cannot take it because it makes them so ill. ddl is a new drug that could be used instead of AZT. It works the same way AZT does, and also blocks viruses that resist that drug. At first, doctors thought ddl’s side effects weren’t as bad as AZT’s. But then they found that it too can cause serious problems.

Pentamidine is another drug Ryan took to treat and later to prevent pneumocystis pneumonia, or PCP. Pentamidine destroys the germ that causes PCP. Doctors found that pentamidine, given in aerosol spray that patients breathe in, prevents recurrences of PCP in AIDS patients. Like AZT, it has helped many of them live longer.

Many people believe that there is already a cure for AIDS.
Unhappily, none of these current treatments cures AIDS.

When will there be a cure?

Not in the near future. In the meantime we have to rely on education to prevent more AIDS cases.

Doctors have made some progress treating the diseases that often kill people with AIDS. But that’s not enough: They have to treat a patient’s weakened immune system. Otherwise, sooner or later the patient comes down with another illness.

Researchers are having trouble coming up with a drug that kills the virus itself. One problem is that the AIDS virus is constantly changing and adapting itself to new conditions, including drugs.

Scientists also are working on developing an AIDS vaccine, like the vaccines against smallpox or polio. A vaccine is a weakened or killed form of a virus that causes a particular disease. When healthy people receive a vaccine, their immune systems develop antibodies that protect them from the weakened virus. Later, if they are exposed to the real thing, their new antibodies will protect them, and they won’t come down with that disease.

One problem with developing a vaccine against AIDS is that new vaccines usually are tested on animals first. This is to make sure they are safe, and do not accidentally infect people. But in animals, the AIDS virus does not cause illness. So scientists have no way of knowing whether a vaccine tested on animals will protect people. It’s possible that they may never come up with a vaccine. Even if we do have one eventually, it won’t cure anyone who is already infected with AIDS.

If the AIDS virus is in blood, couldn’t you cure patients by changing all the blood in their bodies?

No. It’s possible to change
most
of the blood in a person’s body, but not absolutely
all
of it. The HIV virus also hides in many other areas such as the brain. Unless you changed all of a patient’s blood, you could not completely rid his or her body of the AIDS virus.

If you pass the virus to someone else, does that mean you won’t have it any more?

No. You’d still have it, and someone else would too. You can’t get rid of the AIDS virus by giving it to other people. Once you have it in your bloodstream, you’ll always have it.

What if I think I have AIDS?

Don’t panic. Many other illnesses have the same symptoms. But do take a test right away. That way, you can start treatment early and avoid infecting anyone else if you do have it. Call your local city, county, or state health department to find out where to take the test, which is confidential and usually free.

What if I have other questions about AIDS?

The National AIDS Hotline (1-800-342-AIDS) is a toll-free number where you can get any question answered. You don’t have to give your name or address.

RESOURCES

RYAN WHITE
ON VIDEOCASSETTE

Ryan answered questions from children and teenagers on several television programs. Three of them are available on videotape:

“I Have AIDS”—A Teenager’s Story,
a
3-2-1 CONTACT
Extra produced by Children’s Television Workshop. This award-winning half-hour program for eight- to twelve-year-olds combines Ryan’s story and feelings about his illness with basic information about the workings of the AIDS virus. Available for $12.00, including a free teacher’s guide, from:

The National AIDS Information Clearinghouse

P. O. Box 6003, Department G

Rockville, MD 20850

1-800-458-5231

Ryan White on Prime Time Live, April 5, 1990.
This is the ABC news program Jeanne saw in the hospital during Ryan’s final illness. Ryan answers teenagers’ questions about AIDS and his experiences in Kokomo. To request a copy, write:

Pamela Schaub, Video Sales

ABC Distribution Company

825 Seventh Avenue

New York, NY 10019

Ryan White’s Appearance on The Phil Donahue Show.
Ryan answers questions from youngsters in Donahue’s audience. School systems may obtain copies at no cost by writing on their letterhead to:

Multimedia Entertainment

75 Rockefeller Plaza

New York, NY 10019

Attention: Dick Thrall

The Ryan White Story,
the television movie about Ryan, in which he appears as Chad, will be available in home video. For rental or purchase information, contact:

The Landsburg Company

11811 West Olympic Boulevard

Los Angeles, CA 90064

213-478-7878

A study guide to
The Ryan White Story
is available from:

KIDSNET

6856 Eastern Avenue, N.W.

Suite 208

Washington, DC 20012

202-291-1400

NATIONAL ORGANIZATIONS

The National AIDS Hotline (1-800-342-AIDS)
can answer any questions you have in English or Spanish. You can also request brochures and information for children, parents, and teachers.

The National AIDS Information Clearinghouse
supplies posters, brochures, the Surgeon General’s report on AIDS that was mailed to households all over the United States, and all kinds of other useful information in both English and Spanish. Contact:

The National AIDS Information Clearinghouse

P.O. Box 6003, Dept. G

Rockville, MD 20850

1-800-458-5231

American Foundation for AIDS Research (AmFAR):
This private, national, non-profit group provides funding for research into the cure, prevention, and treatment of AIDS. It also produces educational materials for the public, medical and scientific workers, and people with AIDS. AmFAR has offices in New York and Los Angeles:

AmFAR

1515 Broadway, Suite 3601

New York, NY 10036

212-719-0033

AmFAR

5900 Wilshire Boulevard

Second Floor—East Satellite

Los Angeles, CA 90036

Gay Men’s Health Crisis (GMHC)
describes itself as “the oldest and largest AIDS organization in the United States providing direct services, education and advocacy for men, women and children with AIDS.” The group answers questions over their hotline, and volunteers act as “buddies” to look after people with AIDS.

Gay Men’s Health Crisis

129 West 20 Street

New York, NY 10011

212-807-6664

Hotline: 212-807-6655

OTHER MATERIALS

The National Education Association’s Health Information Network,
which prepared the study guide for
The Ryan White Story,
has prepared a range of other materials to help teachers and parents answer kids’ questions about AIDS. Contact:

NEA Health Information Network

1590 Adamson Parkway, Suite 260

Morrow, GA 30260

404-960-1325

Ryan White “For Teens Only” AIDS Poster.
This poster, which appears on page 226, is one of the last photographs taken of Ryan before he died. Single posters are $3.50. If you’d like to place a bulk order or add your own hotline number or logo to the poster, contact Carrie Jackson Van Dyke, 317-633-0600. Make your check or money order out to the Indiana State Board of Health and mail it to:

Indiana State Board of Health

Cashier’s Office

1330 West Michigan Street

Indianapolis, IN 46206-1964

Other Videos on AIDS for Teenagers

AIDS: Changing the Rules.
Host Ron Reagan, son of former President Reagan, model Beverly Johnson, and salsa star Ruben Blades teach viewers how to protect themselves. The language is sexually explicit. In one sequence, Ruben Blades uses a banana to demonstrate the proper technique for using a condom. The Hispanic version of the film features actor Esai Morales and actress Maria Conchita Alonso. Both versions produced by AIDSFILMS and available from:

PBS Video

1320 Braddock Place

Alexandria, VA 22314-1698

1-800-424-7963

AIDS: Everything You and Your Family Need to Know But Were Afraid to Ask.
Former U.S. Surgeon General C. Everett Koop, M.D., answers questions about AIDS from people of all ages. For a free three-day preview and sales information, contact:

Ambrose Video Publishing Company

1290 Avenue of the Americas

New York, NY 10104

1-800-526-4663

AIDSFILMS has produced three short films for young African American and Latino audiences.
Are You With Me?
is for African American women;
Vida
is for Latina women; and
Seriously Fresh
features a group of young African American men. All three films explore ways of insisting on safe sex and condom use. Distributed by:

Select Media, Inc.

74 Varick Street, Suite 305

New York, NY 10013

212-431-8923

A Book for Younger Children

AIDS: You Can’t Catch It Holding Hands,
by Niki de Saint Phalle. (San Francisco: The Lapis Press, 1987). An introduction for children and parents to AIDS.

ACKNOWLEDGMENTS

T
his book could not have been written without the help of many generous people. Ann Marie Cunningham and I would like to thank especially my mother, Jeanne White; my sister, Andrea White; my grandparents, Gloria and Tom Hale; my uncle and aunt, Tom and Deb Hale; their children Monica, Josh, Matt, and Brian; my aunt and uncle, Janet and Leo Joseph; and their daughters Misty, Sarah, and Lisa. We are also deeply grateful to my friends Steve Ford; Mary and Steve Baker; Gary Collins; Phil Donahue and Marlo Thomas; Senator Orrin G. Hatch; Michael Jackson; Elton John; Senator Edward M. Kennedy; David Kirby; Ted Koppel; John Cougar Mellencamp; Woodrow A. Myers Jr., M.D.; Paul Newman; Tony O’Dell; David Quinn; Charlie Sheen; Bruce Springsteen; Betsy and Jim Stewart; and Elizabeth Taylor. We thank the following people for their invaluable support: Shelley Henson, Connie Hillman, Michael Iskowitz, Elise Kim, Karin Lippert, Sharon Nixon, Barbara J. Peterson, Paul Smith, Norma Staikos, and William D. Maddux, Esq.

We owe special thanks to the photographers and agencies who contributed their work to this book: Athletes and Entertainers for Kids, Associated Press/World Wide Photos, American Foundation for AIDS Research (AmFAR), Jeff Atteberry, Bud Berry, Boys Town, Mary Ann Carter, Contact Press Images, Frank Espich, Diana Frysinger, Chris Gulker, Gloria Hale, Indiana State Board of Health,
Indianapolis Star,
Dilip Mehta, National Roller Skating Championships,
People Weekly,
Chuck Robinson,
SIPA Press,
and Taro Yamasaki. Unless otherwise indicated, the wonderful photographs in this book of my family, friends, and public appearances were taken by Jeanne White.

Around the country, many of my friends helped us. In Cicero, Indiana: Wendy Baker, Steffonie Garland, John Huffman, Sandy Huffman, Dee Laux, Heather McNew, Sue McNew, Rev. Ray E. Probasco, Jr., and Jill Stewart. At Hamilton Heights High School in Arcadia, Indiana: Tony Cook, Barbara Cook, Steve Dillon, J. Stanton Renner, Mary Schwartz, and Fred Woodruff. In Los Angeles: Kareem Abdul-Jabbar, Matt Frewer, Howie Long, Greg Louganis, and Alyssa Milano. Among my colleagues from the making of
The Ryan White Story:
Kurek Ashley, Stephanie Cicero, Lukas Haas, Emily Haas, John Herzfeld, Judith Light, Linda Otto, Annette Sutera, and Doug Whitley. Other helpful friends of the White family include Jane Brittain, Diana Frysinger, John Riser of Maui Surf and Sport, and James H. Williams of the Health Information Network of the National Education Association.

The following people contributed their expertise on my illnesses, treatments, and hospital stays: Martin B. Kleiman, M.D.; Laura Kreich Block, R.N.; Barbara Godshall, R.D.M.S.; and Linda Dye and the public relations staff of James Whitcomb Riley Hospital in Indianapolis. Peggy Anderson; Darene Cahill, R.N.; and Mary Spencer also gave us the benefit of their knowledge of chronically ill children.