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As a person living with HIV or AIDS, you face an enormous challenge: keeping
yourself as healthy as possible for as long as possible. To do that, you'll
need to take a very active role in managing your illness. Once you've "taken
charge" of the situation, you can begin to assemble a health care team that
meets your personal standards for treatment and care.
You might assume the first step in this process is finding a doctor-but in reality, that's not enough. To have a real fighting chance, you'll need to find the right doctor for you. Your ultimate goal is to build a comfortable, ongoing relationship that will
provide the foundation of your medical attack.
Coping with an Insensitive or Rejecting Doctor
You may choose to continue with your current physician or find an HIV
specialist to work with your present doctor. Some physicians may resist
caring for HIV-positive patients because they don't feel comfortable dealing with the complexities of the virus. This is a relatively new disease, treatments can be toxic, and recommended therapies are constantly being updated. Your physician may want you to go to a more informed and experienced colleague. (Remember, it's in your best interest to go to an M.D. with experience.)
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If, however, you feel you've been denied treatment or illegally discriminated against, and you need a constructive way to channel your hurt and frustration, write a letter detailing your objection to the doctor's behavior. Send copies to the doctor, his specialty's medical society, and the chief of staff at the hospital or clinic he's affiliated with. (Save a copy for your own records.) You can also complain to an attorney, or:
The Illinois State Medical Society
20 North Michigan Avenue
Chicago, IL 60610
312-782-1654
Then, let go of your anger and move on to more important issues-namely, you and your care! There's no point in trying to force a reluctant doctor to work with you. It's a waste of time and energy, and unlikely to result ineffective (or pleasant) care.
Why You Need an HIV Specialist
Even if your current doctor is extremely supportive, you'll still want to evaluate whether she or he is the best choice to help you deal with this new threat to your health. Some people with HIV go on seeing their "regular doctor" for the sniffles and such, but work with a specialist to monitor
their immune system and treat HIV-related conditions as they arise. If you
decide to stick with your regular doctor, you'll want to make sure that she
or he knows enough to spot HIV warning signs and refer you for treatment when
necessary. (More than half of all HIV patients in the Chicago area are cared
for by family practice M.D.s.)
Characteristics of the "Ideal" HIV Specialist
The "ideal" HIV specialist is a licensed physician who:
- is board-certified in family practice, internal medicine, infectious
diseases, or a related specialty.
- has ample experience treating people living with HIV and AIDS (though it's
not necessary that she or he treats these people exclusively);
- is more of a "hands-on" practitioner than a researcher.
- keeps up-to-date on the latest standard of care (and encourages you to do
the same).
- is open-minded, willing to listen, and follows your lead in terms of how
actively you wish to be involved and how aggressively you want to fight your
disease.
- is connected to a network of other specialists and willing to consult with
them or refer you when necessary.
- will help you explore supplemental therapies and participate in clinical
research trials, if you desire.
- encourages you to ask any question on any issue at any time, and answers in
language you can understand.
- is sensitive to your particular lifestyle concerns and doesn't attempt to judge or change you.
- is sensitive to any addiction/abuse history you may have, and will openly
work with you on recovery-sensitive prescribing and lifestyle options.
- has a reasonable patient load so that you are not always kept waiting for
appointments and don't feel rushed.
- makes sure your medical records are kept confidential.
- has a personality and "bedside manner" that makes you feel comfortable and
secure.
- has an optimistic attitude toward HIV infection and does not consider the
disease to be inevitably fatal.
- is interested in you as a complete human being-a person, not a case or
clinical problem.
- respects your wishes regarding life support and living wills.
- is reasonably flexible about payment schedules, in case you have trouble
paying your bill. If the doctor will accept delayed payment direct from your
insurance company, so much the better.
If you don't have insurance, you may be able to negotiate lower fees for some
services. If you have Medicaid, make sure in advance that the doctor accepts
it.
Finding the Right HIV Specialist
You can get names of doctors qualified and willing to treat people with HIV
and AIDS from various sources, including:
- recommendations from other people living with the disease. Support groups
are an excellent place to hear the straight scoop on area doctors from people
who've already screened or had experience with them.
- local AIDS service organizations.
- ads in local gay and lesbian publications such as the Windy City Times,
Outlines, and Gay Chicago magazine.
Streamlining Your Care
You may find you need a variety of medical and non-medical services. Maybe
you have children, or more than one member of your family is HIV-infected, or
you have day-to-day matters you want help with. Whatever your situation, it
can get tricky and exhausting to run all over town taking care of your
business.
When deciding on a doctor or clinic, it's a good idea to ask if other types
of services are provided besides medical care. Some clinical care providers
offer other kinds of care on site, which can make things easier for you. For
instance, Cook County Hospital's Women and Children's clinic offers a
"one-stop shopping" approach, where you can get several types of services in
one place--including specialized medical care for you and your children,
clinical drug trials, support groups, counseling, help with practical
problems such as housing, insurance, or entitlements, and chemical dependency
treatment. Other programs also offer useful combinations like these.
Besides saving you valuable time and energy, choosing a "one-stop" care
facility will help to assure that you actually do take care of all the things
you need to. Multidisciplinary HIV services provided in a single setting also
are likely to be delivered with a higher level of expertise and sensitivity.
The staff is apt to see more of the total HIV picture, rather than just
pieces of it.
If child care, transportation, or other matters are obstacles for you in
getting the care you need, talk with your doctor to see if the clinic you
visit can offer any help.
1. Physician Referral Services in Chicago
AIDS Foundation of Chicago
411 South Wells
Chicago, IL 60607
312-642-5454
312-642-3378-FAX
312-642-1190-Hearing-impaired TTY/TDD
- Case management coordination, information and referral service. Provides
funding for HIV care and education programs in community-based agencies. The
Foundation advocates for sound HIV-related public policy and increased
support for HIV care and prevention efforts. Bilingual.
Chicago Medical Society
515 North Dearborn Street
Chicago, IL 60610
312-670-2550
312-670-3646-FAX
312-670-2550-Tel-Med line
- Free physician referral service for HIV/AIDS. Health information to
consumers through Tel-Med line. Confidential and bilingual.
DuPage County Medical Society
498 Hillside
Glen Ellyn, IL 60137
708-858-9603
- Free physician referrals.
Gay and Lesbian Physicians of Chicago
PO Box 14864
Chicago, IL 60614
312-670-9630
- Referral service for gay- and lesbian-friendly physicians. Free.
Prologue
800-DOCTORS (362-8677)
- Hospital-sponsored physician referral service for HIV-impacted individuals.
Also has names of licensed psychotherapists, clinical social workers,
chiropractors, optometrists, podiatrists, nutritionists, dentists, oral surgeons, and
physical therapists in your area.
2. Chicago Hospitals and HIV Clinics
Some local Illinois hospitals offer other HIV-related services (like home
health visits, hospice care, and support groups) in addition to inpatient and
outpatient medical care. Ask for details when you call. (If the Physician
Referral Department isn't aware of these alternative programs, ask to speak
with someone in Pastoral Care.)
Alexian Brothers Medical Center
800 Biesterfield Road
Elk Grove Village, IL 60007
708-437-5500
- Infectious disease doctors experienced in treating HIV/AIDS.
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.
Children's Memorial Hospital--Hemophilia Treatment Center
2300 Children's Plaza
Chicago, IL 60614
312-880-4620
312-880-3053-FAX
- Manages children with hemophilia and other coagulopathies.
Columbus Hospital
2520 North Lakeview
Chicago, IL 60614
312-883-7300
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
1835 West Harrison Street
Chicago, IL 60612
312-633-6000
- Inpatient care for people with HIV/AIDS. Outpatient clinics for HIV care.
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.
Evanston Hospital
2650 Ridge Avenue
Evanston, IL 60201
708-570-2000
- Inpatient medical treatment for HIV/AIDS patients.
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 assistance.
Good Samaritan Hospital
3815 Highland Avenue
Downers Grove, IL 60515
708-275-5900
Good Shepherd Hospital
450 West Highway 22
Barrington, IL 60010
708-381-9600
- Inpatient medical care and pastoral care services.
Holy Family Hospital
100 North River Road
Des Plaines, IL 60016
708-297-1800
- Inpatient and home care; support group referrals.
Illinois Masonic Medical Center
836 West Wellington Avenue
Chicago, IL 60657
312-975-1600
- Inpatient medical care with special HIV/AIDS unit and hospice.
Lake Forest Hospital
66 North Westmoreland Road
Lake Forest, IL 60045
708-234-5600
Loyola University Medical Center
2160 South First Avenue
Maywood, IL 60153
708-216-9000
- Offers medical and other services for persons with HIV.
Loyola University Medical Center HIV/AIDS Clinic
2160 South First Avenue
Maywood, IL 60153
708-216-5024, or
708-216-3232
708-216-8198-FAX
- Primary medical care of adults with HIV infection, including social
services/case management, nutritional assessment, and HIV counseling and
testing. Referrals for dental, mental health, substance abuse, and home
health services. Sliding scale fees. Bilingual.
Lutheran General Hospital
1775 Dempster
Park Ridge, IL 60068
708-696-2210
- Medical care for adults and children with HIV. Outpatient care provided at
Nesset HIV Center.
Memorial Medical Center
800 North Rutledge
Springfield, IL 62702
217-788-3000
- Inpatient HIV services. Associated with the Southern Illinois University
School of Medicine.
Michael Reese Hospital and Medical Center
2929 South Ellis Avenue
Chicago, IL 60616
312-791-2050, ext. 0307
312-791-3577-FAX
- In/outpatient care, men's HIV support group, nutritional counseling,
psychotherapy, drug study participation. Sliding scale fees. Public Aid
accepted.
Nesset HIV Center
1775 Ballard Street
Park Ridge, IL 60068
708-318-9320
- Primary-care facility of Lutheran General Hospital for persons living with
HIV/AIDS in northern Cook County. Offers nutritional assessments and support
groups. Sliding scale fees. Bilingual.
Northwest Community Hospital
800 West Central Road
Arlington Heights, IL 60005
708-259-1000
- Basic inpatient medical services for HIV-positive adults and children.
Support groups for HIV-infected persons, families, friends, and caregivers.
Northwestern Hemophilia Treatment Center
345 East Superior Street
Suite 1407
Chicago, IL 60611
312-908-9660
312-908-1815-FAX
- Primary care, nursing care, social services, newsletter, and workshops for
hemophiliacs with HIV and their partners. Also offers nutritional and
psychosocial counseling, dental and genetic referrals. Public Aid accepted.
Bilingual.
Northwestern Memorial Hospital
250 East Superior Street
Chicago, IL 60611
312-908-2000
- Inpatient care for HIV-positive individuals.
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.
Oak Forest Hospital
15900 South Cicero Avenue
Oak Forest, IL 60452
708-687-7200, ext. 2726
708-687-7979-FAX
- Inpatient chronic disease care, acute care, rehabilitation, psychological
and spiritual support. Public Aid accepted. Bilingual.
Rush Presbyterian-St. Luke's Medical Center
1653 West Congress Parkway
Chicago, IL 60612
312-942-5000
- Inpatient medical care, clinical trials, pastoral care. Also offers
HIV/AIDS education and information.
St. Francis Hospital of Evanston
355 Ridge Avenue
Evanston, IL 60202
708-492-4000
- Inpatient and outpatient medical care for persons with HIV/AIDS.
St. Joseph Hospital
2900 North Lake Shore Drive
Chicago, IL 60657
312-665-3550
- In/outpatient medical care for adults with HIV. Multidisciplinary team
includes physicians specializing in HIV treatment, access to clinical trial
drugs, comprehensive social services, counseling and support groups, and HIV
education/risk reduction program.
St. Joseph Hospital
77 North Airlite
Elgin, IL 60123
708-695-3200
St. Therese Medical Center
2615 Washington Street
Waukegan, IL 60085
708-249-3900
Sherman Hospital
934 Center Street
Elgin, IL 60120
708-742-9800
- Basic inpatient medical services, HIV counseling and testing, and
referrals.
Southern Illinois University School of Medical Clinics
751 North Rutledge
Springfield, IL 62702
217-782-0182
- Outpatient clinic with HIV specialists available.
University of Chicago Hospitals
5841 South Maryland Street
Chicago, IL 60637
312-702-1000
- HIV testing and inpatient/outpatient medical care for
persons with HIV.
University of Illinois Hospital
1740 West Taylor
Chicago, IL 60612
312-996-7000
- Inpatient care for persons with HIV/AIDS. Outpatient care available at
Family Center for Immune Deficiency.
Veterans Administration Medical Center--North Chicago
3001 Green Bay Road
North Chicago, IL 60064
708-688-1900
708-578-3737-FAX
- Services for eligible veterans including day and respite care, educational
programs, financial and public assistance, medical care/clinics, long-term
care, substance abuse treatment, housing/shelter, mental and emotional support,
and HIV counseling and testing.
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.
Victory Memorial Hospital
1324 North Sheridan Road
Waukegan, IL 60085
708-360-3000
Wyler Children's Hospital of the University of Chicago
5841 South Maryland Avenue (MC 6054)
Chicago, IL 60637
312-702-6176
- Services for HIV-infected
children and teens include a pediatric clinic for comprehensive medical care,
perinatal/ women's services through OB/GYN department, case
management, clinical trials, HIV counseling and testing, mental health
counseling for caregivers and patients, transportation, child care,
information and referrals.
Narrowing Down Your Options
After you've selected several good candidates for your new HIV specialist,
you'll want to narrow them down and make a choice. If you have an HMO, make
certain the doctors you have in mind are on its acceptance list. On the other
end, you'll want to make sure the doctor's office or clinic accepts your
insurance. It's also a good idea to find out if they'll accept Medicaid,
whether or not you currently have it. If you don't have any insurance, your
options may be limited to doctors affiliated with public hospitals and health
clinics.
The best way to choose your new doctor is to have an initial visit with each
candidate and decide from there if you want to sign on with one of them. In
his best-selling book Final Exit, Derek Humphry gives some excellent advice
on how to conduct this screening process with your "finalists":
Call ahead and make appointments with these doctors.
Say that you would require 15 or 20 minutes of the doctor's time. You will find
that most will appreciate your investigations. For the most part, doctors today
are not as stuffy and formal as they used to be.
While you are waiting to see the doctor for this selection interview, assess
the appearance of the waiting room and whether the magazines are changed
regularly. Are the staff pleasant and helpful? Here are clues to the level of
consideration given to the patient. You do not want a doctor who is just
running a business! If you are kept waiting some time, observe whether the
doctor apologizes for the delay and at least hints at the reason why.
Be quick to put the doctor at ease. You do the talking. Tell who you are,
where you live, and what your health priorities will be. Be candid about why
you are changing doctors....
Don't be nervous about asking your doctor for some objective
criteria. Where did qualification as a physician take place and when? At
which hospital or hospitals does the doctor have privileges? Is this doctor a
board-certified specialist? It is very important to ask what arrangements can
be made for your medical records to be transferred from your old doctor to a
new one....
Do not sign up with any doctor on the spot. Go home and think about your
research. Of course, if you have a spouse or companion, it is preferable that
you make these doctor shopping visits together. When one of you is ill, it is
often the companion who must communicate a great deal with the doctor. Share
your thoughts about the various doctors before coming to a decision.
When you have made your choice, find out which hospital that doctor most
uses for admitting patients. This hospital may have a pre-admission procedure
[which can streamline the paperwork if you enter at some point]. ...If
possible, get copies of your Living Will and Durable Power of Attorney for
Health Care lodged with the hospital in advance. (You will by now have
deposited them with your doctor.) ...
Until tested by serious problems, you cannot make a perfect assessment of
which doctor is the best for you. All you can do while "shopping around" is
to check if you can communicate well with this person. But that is a big
start.
from Final Exit, c1991, The Hemlock Society. reprinted with permission
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This article was provided by HIV Coalition (HIVCO). 
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