positively kids newsletter
FOR CHILDREN, ADOLESCENTS AND THEIR FAMILIES LIVING WITH HIV/AIDS
| MISSION |  | NEWSLETTER |
Winter 1996 Volume 2 Issue 1
A Mother's Plea / A Call to Parents
Zap! AIDS Action Made Simple
Healthcare and the Proposed Budget
Mother Cries "Please Help My Son"
Clinical Trials
Dianne's Desk
We have been very busy with grant writing and fundraising this year. We have also brought on an executive director. We would like to welcome Julia Walter to this position and thank her for all the hard work she has done since being appointed in October of 1995. Julia comes to us with over three years AIDS services experience in the Capital District region in upstate New York. She resides in rural Albany County and is the birth parent of a beautiful daughter, Alicia, who has autism.
Our current issue is going to focus on advocacy issues and personal stories. We will also include our clinical trials section. We encourage any suggestions for future articles. In addition, we are actively seeking articles from service providers, families, friends, children and adolescents who are living or caring for someone with HIV/AIDS. If you are interested in writing an article or have any questions call or write: Positively Kids, Inc.
PO Box 4512
Queensbury, NY 12804
Phone: (518) 798-0915
Fax: (518) 798-8940
E-Mail: posikids@aol.com
Thank You
We at Positively Kids would like to extend our heartfelt appreciation to the following organizations:
Our Brother's Keepers Foundation which is based in the Albany, New York area for the grant which enabled us to purchase our computer.
Water Works Pub of Albany, New York for allowing us to do two fundraising events, one on October 28th and the other on December 9, 1995
Crossgates Mall in Albany, New York for donating space for our Cut For A Cure, which was held on December 9, 1995.
Hair To Style and JC Penney for donating hair stylists to cut during our cut- a-thon.
October 18, 1995
Dear Researcher:
I am writing to urge you to provide more AIDS treatment options to children on the West Coast. Most of the ACTG protocols here are available only to babies and very young children who are drug naive. Trials for older children are conducted at the NCI (National Cancer Institute) in Bethesda, Maryland. Currently ACTG 245 is the only antiviral protocol available to drug experienced children on the West Coast. My child and many others don't fit the criteria for this protocol. Many of the older children have been on AZT or ddI so long that these drugs are no longer effective or cause too many side effects.
Why are 3TC and D4T not being marketed for children? They are not widely available to drug-experienced children. Will we have this same delay with nonnucleoside drugs, the proteases and hydroxyurea? Testing of these drugs in children has been very limited, although early results indicate they are probably less toxic than AZT and ddI and are more beneficial when used in combination. Doing small, short phase I trials at the NCI would be fine if this resulted in treatment for larger numbers of children in a timely manner, but this just isn't happening.
When my child was diagnosed with AIDS at the age of six months, I expected him to die soon -- and so did his doctors. No one dreamed that he would one day be a healthy, happy eight year old. I know many other, children who are still doing well after living with AIDS for many years, but they are running out of options for treatment. It isn't time to give up on them yet, but lack of funding and a small market for pediatric drugs combine to underscore the lack of progress made in Pediatric AIDS studies.
Recently, there has been much interest in perinatal prevention of AIDS, which is commendable. But for older children who have used one or more drugs in the past, there is almost no interest. These are the children who have given all their young years to science and will ultimately give their lives for medical knowledge. The volume of knowledge gained from them is enormous, yet the end results of their commitment to research is abandonment by our society. If we look at these AIDS babies as orphans and a drain on our country's resources, it is easy to say, "We've done enough for them. They're going to die anyway and we have other priorities". But if you could recognize them and care for them as the heroes they are, you would have to conclude that they deserve the best medical science has to offer -- including continuity of care.
Once a drug trial has been introduced into a child's life it becomes a black mark against him in entering new, emerging drug trials. Enormous pressure is placed on parents such as myself. What if I pick the wrong protocol and find that I have used up all his future options? Adults with AIDS are frustrated because a cure hasn't been found; but for parents whose children don't even have access to effective therapy, the frustration is unbearable. I realize that we don't have any super drugs to use yet, but we could certainly make better use of the drugs we have.
Kathleen
A CALL TO PARENTS!
By Dianne Donovan
Kathleen, the parent who wrote the letter in the article "A Mother's Plea", has so eloquently put into words what so many parents of children with HIV/AIDS have felt for a very long time.
Those of us who have children infected with this disease have faced frustration and anguish trying to make the best treatment decisions for our children from the limited number of available drugs.
As parents we are not used to speaking out or sharing our fears and concerns. But the time has come when families must unite and become vocal about issues that surround our children living with HIV/AIDS. This includes treatment issues and healthcare as well as discrimination and many other aspects of this disease.
We must follow in the footsteps of all the wonderful adults who began the AIDS advocacy movement. We must learn from them and begin to advocate for our children who are not old enough to speak for themselves.
Our adult counterparts have learned that they can make a difference and many of them, too many, have given their lives to this fight.
If Kathleen's letter has brought forward the feelings you all have felt please write a letter and send it to Positively Kids. We will then forward these letters to the researchers who are doing HIV/AIDS research. Only by showing a united front can we begin to make a difference for our children. We will make sure Confidentiality is maintained by deleting or changing the names if you request this. But we must speak out.
Since Kathleen sent her letter to numerous individuals in the research community, 3TC has been approved by the FDA for use in children. But we need more drugs approved, if children are to share long term survival with adults.
After receiving Kathleen's letter, two fellow CCG (Community Constituency Group) Representatives of the AIDS Clinical Trial Group (ACTG), Virg Parks from ACT UP Golden Gate and Michael Marco from TAG, and myself met with Dr. Phil Pizzo at the NCI to share our concerns that it is hard for children from the west coast and other regions in the United States to travel the long distance to Maryland for participation in clinical trials. He voiced similar concern and shared that he has contracted with two Florida sites to share in his research and is willing to review sites in California. There has been follow up to this meeting and several of the NCI researchers agree there is a need to coordinate research around the country, especially with cuts in AIDS research funding and travel funding. We will continue to work on this project until changes have been made.
This, at least, is a beginning, but we have a long way to go. We need more pediatric advocates. The time has come for more parents to become vocal. The following article will help you to understand advocacy in simple terms. Again, please write with your concerns we are willing to help advocate for the children, adolescents and families living with HIV/AIDS but we can not do it alone.
If you'd like to help please call or write:
Positively Kids, Inc.
PO Box 4512
Queensbury, NY 12804
Phone (518) 798-0915
Fax: (518) 798-8940
E-Mail: posikids@aol.com
ZAP! AIDS ACTION MADE SIMPLE
By Virg E. Parks, ACT UP Golden Gate Writer's Pool (February 1995)
Why aren't you an AIDS Activist? Not enough time, energy or black clothing? Take a nap and find the time, because the conservative right's Contract With America is a contract on our community and many things we believe in. It is a contract on our family values and some of you haven't even read it. Parts of the contract may not seem evil but check the fine print.
A balanced budget appears admirable, but Anne Donnelly with Project Inform's Treatment Action Network views it differently. "To propose a balanced budget amendment without giving the American public a clear picture of where domestic spending cuts will occur is deceptive public policy." In cutting an estimated $200 billion, areas under assault will undoubtedly include: AIDS services, cancer and AIDS research, Social Security, Medicare, and AID to Families with Dependent Children. Kiss NEA, PBS, and college funding good-bye. Who needs enlightenment, knowledge, job skills, healthcare, housing, and food? Donnelly continues, "The budget will most likely be balanced on the backs of the most disenfranchised populations, the sick and the poor. It is our responsibility to do all we can to prevent that form happening."
SUPER HUMAN STRENGTH
Activism doesn't require a lot of time or effort. In response to impending budget cuts, discriminatory legislation, or other emergencies; AIDS organizations will issue 'Action Alerts'. An AIDS Action Alert is "a notice to write, phone, fax, or e-mail somebody, like a government official, to influence their decision on an important AIDS issue." Normally the organization issuing the alert will have researched the legislation and condensed it to a page or two with instructions regarding who to contact and what to say. Alerts frequently must be acted upon as soon as possible. A 'Zap' is much like an Action Alert, but with a specific target (i.e. pharmaceutical CEO) on a certain day, thereby restricting 'business as usual'. Zaps are usually more spontaneous and involve fewer people; utilizing surprise, coordination, and modern technology. Think of super heroines/heroes responding instantly to a crisis. X-Men in leather jackets. Wonder Woman with automatic redial.
Regina Aragon of the San Francisco AIDS Foundation emphasizes the value of community input. "When trying to reauthorize the Ryan White bill last year, it was great to have people calling in support of care funding while we were lobbying in person. I kept getting comments about the number of calls and how they don't often hear from this community." You don't need to understand every detail of an issue to participate. Just calling or faxing 'Don't cut AIDS funding' is enough. Aragon adds, "Those of us who lobby Congress on a regular basis can fill in the blanks, but we need the support from home to make the point".
WHO DO YOU CALL?
Alerts may suggest you call certain representatives because they influence important committees. Often alerts say call your representative. If your representative already appreciates your concerns, call anyway. They need to tell their colleagues ' I received 500 calls from angry constituents last week, who don't want AIDS funding cut'. If you don't know who your representative is, get out the phonebook. In front of the white pages are listings for local, state, and federal government offices. There you can find your Congressperson, Senator, and state reps. Usually they'll list a local phone number. Regarding urgent federal issues, it's good to call both DC and local offices. Any Congressperson can be reached at (202) 225-3121 (call now!) or any Senator at (202) 224-3121. Also request addresses and fax numbers. Ask if your representative has a legislative aide specializing in AIDS or health issues. If possible, speak to that person directly and send correspondence to his/her attention. Address letters (even to politicians you hate) with appropriate titles or they'll never get past the first line.
NETWORK! NETWORK! NETWORK!
The advocacy networks listed below are all free to join. They can provide information on important legislative issues and tips on how to write or call your legislative reps. They can also advise you on lobbying in person. Several are involved in 'AIDS Watch' lobby days in DC. The last two limit membership to California. In other states, contact your local AIDS organization and ask if they are doing any policy work. If not, sign them up too. Involvement of persons with AIDS, families and caregivers is invaluable.
Human Rights Campaign (HRCF) usually focuses on lesbian/gay rights issues, but also works on HIV/AIDS. HRCF coordinates the Federal Advocacy Network (FAN) which sends monthly 'Action Alert' newsletter and emergency mailings. FAN offers various levels of involvement, from 'citizen advocate' to Congressional District Coordinator'. Call HRCF in DC at (202) 628-4160 for your State Coordinator.
National Association of People With AIDS (NAPWA) coordinates the NAPWA Advocates Network. In addition to addressing national issues, NAPWA is working to create local networks of grassroots activists. To join, call Lisa Ragain at (202)989-0414, ext. 11. Or write NAPWA, 1413 K Street, NW, Washington, DC 20005.
Treatment Action Network (TAN) is part of Project Inform. TAN mails or faxes TAN Alerts regarding legislation affecting HIV/AIDS research or treatment. TAN also maintains an Action Line (415) 626-7231 with a regularly updated messages 24 hours a day. To join leave your name and address at the above number or call Project Inform's Treatment Hotline at (800)822-7422, 10am-4pm Pacific time, Monday-Saturday (be sure to specify that you are joining TAN).
San Francisco AIDS Foundation coordinates the Bay Area HIV Advocacy Network (BAHAN) which sends out alerts and notices of community meetings. SAFA also coordinates a state lobby day and publishes HIV Policy Watch monthly. Anyone in Northern California can join by calling (415)864-5855, ext 3032. Or write SFAF, PO Box 426182, San Francisco, CA 94142-6182.
AIDS Project Los Angeles (APLA) operates the statewide Citizens Network. In addition to encouraging input in AIDS policy at all levels, APLA publishes a quarterly AIDS policy newsletter, Catalyst. To join the Citizens Network or receive Catalyst call (213)993-1365 or write APLA, Public Policy Dept., 1313 North Vine St., Los Angeles, CA 90028.
See also Action Alerts on www.aidsnyc.org
HEALTHCARE and the PROPOSED BUDGET
By Dianne Donovan
My husband and I adopted two children with AIDS. They are beautiful, loving children and they are our hearts.
Our daughter Quashawn came to us at 8 months a very sick little girl who was given 2 months to live. We are pleased to say that she will turn 6 this month. Our son Daniel arrived at almost four years of age unable to walk or talk. Danny is now 8 and doing well in first grade where he talks up a storm and runs all over the place.
Our children are doing well because of good health care combined with educating ourselves in order to make decisions about their healthcare.
When we adopted our children we were given a subsidy package which is funded under Title 19 of the Social Security Act called Title IV4(e). This package includes Medicaid and a monthly stipend to help with their care. In addition, we have placed them on our health insurance. Medicaid provides us backup for the things not covered by our insurance, which are numerous.
Currently Congress, in its attempt to balance the budget, has proposed Block Grants as a part of the revision of Medicaid. This could lead to devastating changes in Medicaid on a state to state basis.
In New York State, Governor Pataki has proposed drastic cuts in Medicaid spending.
If some of these changes are not stopped many individuals such as my children stand to lose Medicaid. Some of these individuals do not have other health insurance to rely on.
Positively Kids along with other AIDS organizations have been busy lobbying on these issues.
In preparation for our advocacy efforts, my husband and I completed a detailed budget of the costs of care for our 2 children. These budgets included the cost of medications both prescription and over the counter, doctor visits, laboratory workup, and respite care ( which I use to do my AIDS work). We cover the past twelve months of costs and labeled whether it was covered by our insurance, Medicaid or out of pocket. Medicaid pays for $58,227.14 of the total costs of their care, which came to $96,540.74. In our case Medicaid is so high because we do not have a prescription plan with our health insurance so medication is covered by Medicaid.
My husband and I are lucky since we are both healthy and uninfected so we have a good family income. Our net annual income is $63,445.72.
But, if we were to lose their Medicaid coverage we would have only $5,218.58 a year to cover our mortgage, food, utilities, clothing, and medical care for the rest of our family. As you can see we would lose everything we worked all our lives to obtain.
As I stated earlier, we are fortunate to have a good income and fairly good insurance, this is not the case of most families who have children and adolescents living with HIV/AIDS. Nor is it true of most adults with this disease. The reason we have decided to share such personal information with you and legislators is the need to advocate for all people living with this disease. Again I must say, it is time for all of us to take a stand and let our government know we will not tolerate losing healthcare for people who are less fortunate and have life threatening illness.
We would like to ask all of you to come up with budgets of the cost of care for your family member(s) infected with HIV. These budgets need to be backed up with evidence of cost. I realize this is a time consuming chore, but it can make a difference. In sharing our information many legislators were shocked at the yearly expense. We need to show significant numbers of families, with these type of expense, in order to truly make a difference.
If you would like to help us please call or write Positively Kids and we would be happy to share how our budgets where completed. We would then take all the budgets and do an advocacy effort in Congress.
A MOTHER CRIES "PLEASE HELP MY SON"
By A Mother
I am writing today about hopelessness and despair and as a mother crying out for help.
November 20, 1995
On Monday morning my son tried to take his life by attempting to jump from a second story window in our apartment.
I am a woman living with HIV. My son needed help but no one was able to help him deal with the fact that his Mother has this disease.
All he sees is death all around us, you see in the past 18 months we have lost a total of 13 people with AIDS. Friends and loved ones and he can't see anything beyond death.
This is a sad story but it must be told. How many of our sons and daughters have attempted suicide or have taken their lives because of this disease. There is no funding for children that are not infected with HIV. But in all reality they are so affected by the disease.
As I painfully write this letter, my son is sitting in a Children's Mental Hospital in Weschester County, 3 hours from our home, because there was no one to hear his cry and our desperate plea for help.
As my body dies, inside my heart is breaking. I have to take a bus then a train and finally a cab in order to see him and to attend the group therapy with him on Mondays. I do not get home until 3:45am the next day. I am tired, angry, hurt and disappointed that our Government has let my son fall through a huge hole, not a small crack.
Please let's address this issue before another young person tries to take his or her life.
A Loving Mother
CLINICAL TRIALS
Note: some of these trials have closed since initial publication, and others have opened. Please see Clinical Trials for Children and Clinical Trials for Pregnant Women on the AIDS Treatment Data Network site for up-to-date information.
The Following Clinical Trials Are Actively Enrolling HIV Positive Infants, Children, Adolescents and Pregnant Women (Adolescents are listed in either children or adult trials)
ACTG TRAILS: Are conducted at sites throughout the country. For more information call: 1-800-TRIALS-A
TREATMENTS FOR HIV
ACTG - 149: A Phase II trial using G-CSF. The trial will look at the use of anti -cancer drugs, adriamycin, bleomycin, vinblastine and dacarbazine alone or in combination with G-CSF. The goal is to see which works best. The trial is open to adolescents and adults, age 12 years or older.
ACTG - 180: A Phase I study to test the safety and tolerance of Nevirapine alone or in combination with AZT. This trial is open to children, 2 months to 18 years of age.
ACTG - 188: A neurodevelopmental and Neurological study of HIV positive infants and children in clinical trials.
ACTG - 219: A late outcome study in children.
ACTG - 239: A Phase I/II study of the safety, toxicity and antiretroviral activity of AZT versus combination therapy with ddi (Didanosine) in young infants with HIV, 6 months of age or younger.
ACTG 245: A Comparative Study of Combination Antiretroviral Therapy in children and adolescents with advanced HIV Disease.
ACTG 300: A Randomized Comparative Study of combined AZT and 3TC (zidovudine & Lamivudine) vs. the better of ddi monotherapy vs. AZT plus ddi in symptomatic HIV-1 infected children.
TREATMENT OF OPPORTUNISTIC INFECTIONS AND RELATED DISORDERS:
ACTG - 142: A Phase III trial for treatment of Non-Associated Hodgkin's Lymphoma. This trial uses low dose versus a standard dose of mBACOD Chemotherapy with rGMCSF. This trial is open to adolescents and adults, 12 or older.
ACTG - 163: ACTG - 163: A Phase I/II Open-Label trial to test safety and effectiveness of different combinations of drugs to treat Kaposi's Sarcoma (KS). The standard medication used to treat KS, (Doxorubicin, Bleomycin and Vincristine) will be given to everyone. Patients will also be given either ddi or ddC. Both patient and doctor will know what medications are being administered. This trial is open to adolescents and adults, 13 years and old.
ACTG - 177: A Phase II, Open Label Study to test safety and effectiveness of two drugs used to treat Tuberculosis. Group one will take Rifampin and Pyrazinamide. Group two will take Isoniazid and vitamin B6. Thhe doctor and patient will know which drugs are being given. The trial is open to adolescents and adults, 13 years or older.
ACTG - 179: A Phase II/III study of two different doses of Dapsone. This will be given for prevention of PCP in children who can not tolerate Bactrim. The child must have already had a previous episode of PCP. This trial is open to children 1 month of age to 12 years old.
ACTG - 183: This is a randomized, comparative, pharmacokinetic study of Ganciclovir for CMV Colitis. Patients will begin with 21 days of intravenous drugs. They will be divided into three groups. Each group will be given different doses of Ganciclovir with or without Acid Hydrochloride. This trial is open to adolescents and adults, age 13 years and older.
ACTG -215: A Phase I, Open Label, Dose-Escalating trial. This study will test TNP-470 at different doses for treatment of Kaposi's Sarcoma (KS). This trial is open to adolescents and adults, ages 12 years or older.
ACTG - 226: A Pharmacokinetic and Tolerance Study of Oral Ganciclovir in HIV-infected children with Asymptomatic Cytomegalovirs infection and Low CD4 Cell Counts or Quienscent Cytomegalovirus Disease.
ACTG - 227: A Phase I, safety and pharmacokinetics study of Atovaqoune Suspension, for the prevention of Pneumocystis Carinii Pneumonia (PCP). This is open to children 1 month to 12 years old.
ACTG - 251: A Phase II/III, Blinded Placebo-Controlled study of Thalidomide, for the treatment of mouth ulcers. There will be two groups, one will receive the drug, the other a placebo. After four weeks, if no improvement is shown, the dose of medication will increase and the placebo group will be given the drug. Because of the history of Thalidomide there are strict birth control measures for both male and female. This study is open to adolescents and adults, 13 or older.
ACTG - 254: Ramdomized Phase II/III, two-armed study of Micronized-Atovaquone and Azithromycin (AT/AZ) as compared to TMP/SMX in the prevention of serious bacterial infections when used in children aged 2-18 years with HIV infection.
ACTG - 292: A Double Blind, Placebo Controlled trial of the safety and immunogenicity of a seven valent conjugate pneumococcal vaccine in presumed HIV-infected infants.
PERINATAL TRIALS
ACTG - 185: A Phase III, Ramdomized Double-Blind, Placebo-Controlled trial. This study will compare HIVIG to IVIG for prevention of HIV transmission from mother to child. All patients will also take AZT. This trial is open to adolescents and women, age 13 years and older.
ACTG - 249: A Phase I trial to evaluate Didanosine (ddI) in HIV-1 infected pregnant women.
ACTG - 255: Study of perinatal transmission of Zidovudine-Resistant HIV amont pregnant women treated with Zidovudine.
NATIONAL INSTITUTES OF HEALTH
Trials are conducted in Bethesda, Maryland. For more information call 1-301-402-1391
A Phase I/II study of Protease Inhibitor, MK-639, in children with HIV infection. The trial will study Safety Tolerance and Effectiveness of MK-639 alone for 12 weeks and then in combination with AZT and 3TC.
A Phase I/II Study of Protease Inhibitor, ABT-538, in children with HIV infection. The study will determine the safety, tolerance and effectiveness of ABT-538 alone for 12 weeks and then in combination with AZT and/or ddI.
A Phase I Study to Evaluate the safety and effectiveness of KN1-272, a Protease Inhibitor, in HIV infected children who have had no prior antiretroviral treatment (arm A) and children who have become intolerant or refractory to prior treatment (arm B).
NIH - Treatment of Opportunistic Infections
A Pilot Study of the Combination of All-Trans-Retinoic Acid and Interferon for the treatment of Lymphoproliferative Disorders in children with Immumodeficiency syndrom.
A Pilot Study for the treatment of Non-Hodgkin's Lymphoma in Patients with Inherited and Acquired Immunodeficiency Syndromes.
A Phase I Study of Levamisole in children and adolescents with Advanced Human Immunodeficiency Virus Infection.
A Study of IL-2 in children with HIV infection.
PHARMACEUTICAL COMPANY TRIALS
Serano 7827: a parallel group, double-blind study of Serano's mammalian cell-derived recombinant human growth hormone (r-h GH [m]) in children with HIV-associated failure to thrive.
Call Positively Kids, Inc for more information (518)798-0915.
NOTICE
Opinions expressed in various articles are not necessarily those of the membership of Positively Kids.
Information and resources listed are for information only and do not constitute any endorsement by Positively Kids for any medical treatment.
Positively Kids recommends that any and all medical treatment received or engaged in be discussed thoroughly and frankly with a competent, licensed and fully AIDS informed medical practitioner, preferably your personal physician.
Although great steps have been taken in an attempt to insure the accuracy of all the information presented herin, Positively Kids, the staff and volunteers who produced it, or various institutions and personnel who provided us with information; can not be held responsible for any damages, direct or consequential, that arise from the use of this material or due to any errors contained herin.
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Pages modified: 3/18/97