This is an excerpt from There is Hope: Learning to Live with HIV, 2nd
Edition, written by Janice Ferri, with Richard R. Roose and Jill Schwendeman, a
publication of The HIV Coalition.
Holistic approaches are different from mainstream medical approaches in that
they address not only your physical needs, but also your spiritual,
psychological, and social needs. Among the most popular therapies are
meditation, yoga, massage and bodywork, acupuncture, herbalism, macrobiotics,
visualization, chiropractics, stress reduction and relaxation techniques,
vitamin therapy, homeopathy, and tai chi.
It is probably best to think of these options as "supplemental" or
"complementary" therapies rather than true alternatives to mainstream
medicine. While one or more of these approaches may help you feel more
relaxed and better able to cope with your illness, they are best coupled with
traditional Western techniques. Reputable holistic therapists will urge you
to discuss supplemental treatments with your doctor before pursuing them. If
someone tries to sell you something that looks and feels like "snake oil,"
walk away.
Complementary therapies have not been proven to help the immune system.
However, the benefits they can provide in such areas as pain management and
stress reduction should not be overlooked in creating a strategy for living
with HIV.
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Before trying any non-medical approach, it's extremely important to consult
your doctor. If not properly administered, special diets and other remedies
can jeopardize your health. Any change in your treatment program should be
closely monitored.
Doctors have different opinions on the subject of complementary therapies.
Some consider them helpful to the extent that they enhance a patient's sense
of empowerment and well-being. Others consider them potentially dangerous. If
you're not sure how your own doctor feels, ask. A good way to get into the
topic is to pose questions: "Is this therapy accepted by the medical
profession? Why or why not? Could it benefit me in addition to my
conventional treatment? Is there any possibility it could harm me or be
counterproductive to what we're trying to accomplish? How vigorously should I
pursue it?"
Notice that by broaching the subject this way, you enlist the
doctor's advice. You haven't attacked the doctor's form of healing or
questioned his or her competence. Instead, you've invited the doctor into the
decision process as your partner.
Supplemental Treatment Centers
AIDS Alternative Health Project
4753 North Broadway
Suite 1110
Chicago, IL 60640
312-561-2800
312-561-8225-FAX
Massage therapy and bodywork, craniosacral therapy, acupuncture,
chiropractics, and nutritional counseling. All clients must have a
primary-care physician.
American College of Traditional Chinese Medicine
450 Connecticut Street
San Francisco, CA 94107
415-282-9603
Acupuncture and traditional Chinese medicines. Financial assistance
available for those with HIV. Multilingual.
Center for Natural and Traditional Medicines
PO Box 21735
Washington, DC 20009
202-234-9632
202-332-2132-FAX
Offers an information and resource center on the use of
natural and traditional healing methods from various cultures worldwide.
Living Beyond
8112 South Champlain Avenue
Chicago, IL 60619
312-483-0874
Not-for-profit community-based organization helping economically
disadvantaged HIV-infected people. Information on non-traditional treatments
such as massage, vitamin therapies, and acupuncture, Sliding scale fees.
Northside HIV Treatment Center
4753 North Broadway Avenue
Chicago, IL 60640
312-271-6335
312-275-8874-FAX
Complementary therapies including acupuncture, massage, and Chinese herbs.
Vida/SIDA
2048 West Division Street
Chicago, IL 60622
312-278-6737
312-278-6753-FAX
STD/HIV prevention project and alternative health clinic. Library, condom
distribution, acupuncture and chiropractic services, peer education training.
Public Aid accepted. Bilingual.
Supplemental Treatment Books and Publications
Bamforth, Nick
AIDS and the Healer Within
and
Trusting the Healer Within
New York: Amethyst Books, 1988 and 1989.
Both books encourage readers to find spiritual balance as a strategy for
overcoming disease.
Gregory, Scott J., O.M.D.
A Holistic Protocol for the Immune System
Palm Springs, CA: Tree Life Publications, 1990.
Henry, K.
"Alternative Therapies for AIDS: A Physician's Guide."
Minnesota Medicine, 71: 297-299, 1988.
Journal of Naturopathic Medicine
Available from:
American Association of Naturopathic Physicians
Journal Management Group, Inc.
10 Morgan Avenue
Norwalk, CT 06851
203-866-7664
Kaiser, Jon
Immune Power: A Comprehensive Treatment Program for HIV
St. Martin's Press, 1993.
Mikluscak-Cooper, Cindy
Living on Hope: A 12-Step Approach for Persons at Risk or Infected with HIV
Berkeley: Celestial Arts, 1991.
Tilleraas, Perry
The Color of Light
New York: Harper Collins, 1988.
Zivicky, J.F.
Reader's Guide to Alternative Health Methods
Milwaukee, Wisconsin: American Medical Association, 1993.
Clinical Drug Trials
Another treatment option is the clinical drug trial or "protocol." These
corporate-, university-, or government-sponsored research studies test new
medications and treatments for HIV-related conditions. People who have a
certain type of illness or meet a certain set of characteristics may qualify
to take part. Not everyone who applies is eligible for every trial.
However,
you can keep applying to different trials that interest you until you are
accepted.
A clinical drug trial is not something to be entered into lightly. There are
both risks and benefits to consider:
Risks
You might be asked to discontinue treatment that has been working for you
while you are in the study.
The experimental drug may not work for you or anyone else.
It could be unsafe-possibly making your condition worse or causing harmful
side effects.
You might be given a placebo (a "sugar pill" or shot containing no
medicine) instead of the actual test drug. A placebo is used only in studies
where there is no treatment which has been proven to be effective. You will
always be told if you might be given a placebo before you sign up.
Benefits
Many times, only trial participants have access to the drug being studied.
If a new drug works, you'll be among the first to enjoy its benefits.
The experimental medicine will be provided free. You may also receive
health services (such as blood tests and checkups) free or at minimal cost.
This can help cut down on your out-of-pocket and insurance costs in
monitoring your health.
The doctors and nurses running the study will be HIV experts.
Expect to receive sensitive, top-quality care throughout the trial.
Participating in a study gives many people a sense of power and control
over their disease. They feel they're doing all they can to fight it.
Your participation will help researchers find new ways to fight HIV, and
will eventually help others living with it.
Clinical trials are closely monitored by institutional and community review
boards to make certain they are ethical and that patients are fully informed.
Special Notes
No one can force you to join or stay in a clinical trial. You will be
participating on an informed, voluntary basis. However, be aware that joining
is a potentially cumbersome commitment. Get all the facts before signing
up-and don't be afraid to ask questions along the way.
Pregnant and nursing women are often placed in special trials where the
medication's effect on the baby is better known. Contrary to rumor, women do
not have to have an abortion if they become pregnant while participating in a
trial. However, women are often required to use effective birth control as a
condition for joining a study.
Ask those running the study upfront what your out-of-pocket costs will be,
and whether they will reimburse you for transportation or child care
expenses.
If you decide the benefits outweigh the risks, ask your doctor to try and
locate a study that would be right for you. Or, you can track down studies
that interest you and bring them to his or her attention. Either way, your
doctor will be the one to recommend you. You probably won't be able to get
into a study on your own.
An increasing number of drug trials are community based, meaning patients can
participate in them through their own doctors without having to travel to a
test site. Before you investigate the following sources independently, ask
your doctor whether she or he is aware of or already participating in any
community based trials you might qualify for.
You may also hear about trials through various HIV/AIDS newsletters and from
others living with the disease.
Clinical Trials Information
AIDS Clinical Trials Information Service (ACTIS)
PO Box 6421
Rockville, MD 20849
800-874-2572
800-243-7012-Hearing-impaired TTY/TDD
Free and confidential telephone or printed information
on ongoing private and federally-sponsored trials
around the country.
American Foundation for AIDS Research (AmFAR)
733 Third Avenue, 12th Floor
New York, NY 10017
212-682-7440
212-682-9812-FAX
Supports scientific and education research, including community-based clinical trials and public policy development. Publishes the AIDS/HIV Treatment Directory, a comprehensive source of information on treatments in development for AIDS, opportunistic infections, and other HIV-related disorders. Multilingual.
Chicago Community Programs for Clinical Research on AIDS
(CCPCRA)
711 West North Avenue
Suite 201
Chicago, IL 60610
312-266-0227
312-266-0306-FAX
HIV/AIDS clinical trials through doctors and clinics. Free.
Children's Memorial Hospital
2300 Children's Plaza
Chicago, IL 60614
312-880-3200
HIV counseling and testing, clinical trials, in-/outpatient
medical care, outpatient medical/OB-GYN care for mothers of
HIV-positive children. Multi-disciplinary medical team with
referral to specialty clinics as needed.
Public Aid accepted. Bilingual.
Cook County HIV Primary Care Center
1835 West Harrison Street
CCSN 1268
Chicago, IL 60612
312-633-3005
312-633-3002-FAX
Provides medical care, HIV counseling and testing, education
and prevention programs, information, case management,
substance abuse and mental health treatment, pastoral care,
clinical trials, housing referrals, financial assistance, food
and transportation assistance. Offers legal assistance through
AIDS Legal Council's on-site project. Free.
Bilingual.
Cook County Hospital Women and Children's HIV Program
1835 West Harrison Street
CCSN 1200
Chicago, IL 60612
312-633-5080
312-633-4902-FAX
Provides inpatient and outpatient care for HIV-positive adults
and children, including chemical dependency counseling and
clinical trials. Educational counseling, peer education and
training on HIV/AIDS for adults and adolescents, as well as
psychosocial services and legal assistance.
On-site child care available.
Family Center for Immune Deficiency (FCID)
840 South Wood Street
Room Red-5
Chicago, IL 60612
312-996-8337
Outpatient clinic of the University of Illinois Hospital for
adults and children with HIV/AIDS. Clinical trials, adult support group, social
services, and nutrition.
Northwestern Memorial Hospital HIV Center
303 East Superior Street
Passavant 8E
Chicago, IL 60611
312-908-8358
Wide range of medical services including clinical trials. Set fee.
Test Positive Aware Network
"Directory of Chicago HIV/AIDS Clinical Trials"
1340 West Irving Park Road
PO Box 259
Chicago, IL 60613
312-404-8726
Updated regularly, the Directory is the most complete listing
of treatment trials taking place in the Chicago area. Includes a complete explanation of
the clinical trials process.
Veterans Affairs Department--Edward Hines V.A. Hospital
5th Avenue at Roosevelt Road
Hines, IL 60141
708-343-7200, or
312-216-6700
708-216-2776-FAX
Inpatient/outpatient medical care, case management, clinical trials,
dental care, education programs, financial assistance, home health care, hospice, long-term care facility, mental health and emotional support, substance abuse treatment programs, pastoral care, and HIV testing for eligible veterans.
WATCH Clinic
5841 South Maryland Avenue
Chicago, IL 60637
312-702-6621
Case management, primary health care, infectious disease care,
anti-retroviral treatment, opportunistic infection prophylaxis.
Also offers OB/GYN, perinatal and some adult clinical trials for HIV-positive women.
Public Aid accepted.
This article was provided by HIV Coalition (HIVCO).
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