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Taking Responsibility Over Our Own Health Care

Fall 1996

"The suffering that I see people going through is one of the hardest things for me to deal with and I believe that my role as a physician is to give people as much of quality-time as I can. I try not to determine what quality-time is, because what's quality-time for one person is misery for another, so I try to let each person decide what they feel is quality time."
--Dr. Steven Hosea

The many peculiarities of the AIDS epidemic have forced us to reevaluate aspects of our culture that have been ingrained in our minds for generations. We've had to change our sexual behaviors, how we educate children, how we structure scientific research, how we access the medical system, and how we mobilize entire communities to create programs that help to minimize the adverse effects of an ever growing epidemic. We've had to change ourselves because, in one way or another, we've all been affected by AIDS.

For those of us who are HIV+, the inner changes can be brutal. Reduced life expectancy and the adjustment to a daily regimen of medications, nutrition, and exercise, while fighting depression, can result in a totally different attitude towards life. It's as if a brand new human being has emerged. As HIV-infected people, it's important to learn how to manage living with our new reality. The better we cope with these changes, the better our chances of living longer and healthier.

There are many support groups that can help us with this task, yet it's unfortunate that many people do not access these services, for reasons that may range from fear of discrimination to financial stress.


A Little History

After the discovery of antibiotics, vaccines, and the conquering of most life-threatening bacterial infections, the medical community was immersed in self-confidence. During the 70's, young medical students intending to specialize in infectious diseases (I.D.) were often discouraged and even ridiculed by their peers. Infectious Disease was becoming a specialty threatened with extinction. The trend was oncology (cancer) and cardiology, as well as cosmetic surgery. In any given city one would find far more plastic surgeons than ID doctors.

When AIDS was first found to be caused by a virus, HIV positive people were referred to ID doctors. Other practitioners weren't taking AIDS cases under the excuse that they were not ID specialists. Sometimes covering up their own fears and biases. Soon, there weren't enough ID doctors to attend to the astonishing numbers of new cases. The study of infectious diseases then experienced a period of renaissance.

A Team Of Doctors

The booming number of new infections and the emergence of viable treatments and antiviral therapies slowly lured physicians into the infectious diseases field. Today, we find doctors from diversified training backgrounds treating people with HIV. They are pediatricians, gynecologists, dermatologists, neurologists, general practitioners, all joined together to provide care to people infected with the new virus.

Very often patients say: "My doctor is not an HIV (meaning ID) doctor, but she is very knowledgeable and good at listening to my concerns. " It's important for us to be treated by specialists because our disease is so complex. In fact, studies have been done that show people with HIV who are treated by Infectious Disease specialists live longer than people who are treated by doctors who are not specialists. However, a doctors' experience, knowledge and willingness to listen to the patients concerns, are most important in order to provide proper medical care. If your doctor does not have all of these characteristics, even if he/she is an ID specialist, don't be afraid of changing to another doctor. If you are being treated for HIV by your family physician, you may want to consider finding a specialist. After all, you are the one whose life is at stake.

New Way Of Providing Care

HIV infection being such a new disease, physicians had to re-educate themselves. Constant changes in treatment guidelines, the frequent discovery of new drugs and symptoms, as well as issues involving sensitivity in personal handling of each case, have forced doctors to reevaluate the way they practice medicine.

Now, more than ever, physicians promote and attend conferences to learn and share information about scientific research and developments. They are networking with social services and providing referrals to assistance programs. They are working more often and more efficiently with health insurance programs to optimize benefits to their patients.

This new way of practicing medicine is having profound effects throughout the entire medical community. It is a whole new attitude that, although originally intended to better meet the needs of HIV infected people, is having an beneficial impact in the treatment of all other diseases.

One important behavioral change happens inside the doctor's office: a new relationship between doctor and patient develops. A shift of responsibility over one's health is replacing the conventional "doctors orders"attitude. As patients, we must pay attention to these changes in order to get the best care possible.

Become Partners

To begin with, patients must drop the "patient attitude" and no longer act as passive subjects under doctors orders. We can not expect to visit our doctors office and have him/her making all the tough decisions about our disease. HIV infected people can't afford to be passive patients. There are choices to be made, treatment strategies to be selected and alternative therapies to be considered. The management of one's health can no longer be delegated to a health care provider. Even better, physicians are now assuming the role of partners with patients, assisting them to manage their disease by providing the best information and evaluation on the development of the infection.

Taking Charge

This most welcome change in the medical providers approach calls for a change from the patients as well. In order to get better medical care, HIV positive people must become their doctor's partners, and being good partners involves a lot of homework.

Here are 10 things you can do to become a better partner with your doctor:

  1. If you don't know yet, learn how HIV is transmitted and how to avoid further infections
  2. Learn how HIV infection develops within your body and what symptoms to watch for
  3. Talk to other people living with HIV. Networking with other patients can be a very useful way of getting new information, so do not isolate yourself
  4. Read about HIV/AIDS as much as you can. In addition to books on the subject, you will find very interesting and useful information in newsletters such as BETA and Being Alive
  5. Bring your concerns to the doctor. No subject is too unimportant or too embarrassing to discuss with your doctor
  6. Take notes of all symptoms you might be experiencing, even if they don't appear to be HIV related. That cold you sneezed off three weeks ago may explain a sudden drop in your T-cell count. Women should also keep a menstrual calendar and take notes of any changes in their periods. Take your notes to the next visit
  7. Learn how to read your lab results and what the numbers mean in the course of the infection. Many of the choices you will be faced with depend on the interpretation of those numbers
  8. Always ask about drug interactions, resistance, and side effects. Be alert for any unusual symptoms.
  9. Once you decide which therapy is best for you, take your drugs according to your doctor's recommendations. This is especially important if you take protease-inhibitors because skipping pills or taking drug holidays will cause you far more harm than if you weren't taking any medication at all. But, in case you fail to follow the recommendations, be sure to tell your doctor. He/she will then be able to present to you some alternative choices
  10. Inform your doctor about any alternative therapies you might be taking. He/she will be able to alert you to any possible therapy conflict.

Sharing the responsibility over your own health care with your doctor, instead of just expecting him/her to provide you with the right answers, takes a lot of courage. You'll have to overcome your own inhibitions and the desire of being taken care of. Some people are also afraid of getting too wrapped up in their own disease and facing depression as a consequence.

Keep in mind Dr. Hosea's words. Only you can decide what is good for you and doctors are prepared and willing to assist you in making the best choices. The right doctor is not enough to assure the best health care anymore. You also have to be a good patient, or better yet, a good partner.

Recommended Reading

"Bulletin of Experimental Treatments for AIDS" (BETA), quarterly by the San Francisco AIDS Foundation. 1.800.959.1059.

"AIDS Treatment News" - Available here at The Body, published twice monthly by John S. James in San Francisco. Reports on experimental and standard treatments, 1.800-TREAT-1-2.

"Being Alive" - monthly by Being Alive, People with HIV/AIDS Action Coalition in Los Angeles. 1.213.667.3262 for subscription information.

"WISE WORDS" - HIV/AIDS treatment information published by women with HIV/AIDS. Contact Dawn Averitt-Doherty at 125 5th Street, NE Atlanta, GA 30308, fax: 404.815.7755.

"Newsline": People With AIDS Coalition of NY - monthly. Call for subscription info: 800.828.3280.

Also see The Body's HIV/AIDS Basics & Prevention and On Learning You're HIV Positive sections.

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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.