The Bay Area Reporter - November 20, 1995
Kate Krauss, ACT UP/Golden Gate Writers Pool

In general, Kaiser treats people with AIDS much the same as its other patients, when in fact they may need increased attention and faster access to physicians and treatments.

Still, Kaiser members can use a number of strategies to improve the quality of their medical care. First, they should choose their doctor carefully, based on his or her qualifications and experience in treating people with AIDS. They can get referrals from other Kaiser AIDS patients, by contacting AIDS organizations such as ACT UP/Golden Gate or Healing Alternatives Foundation, or through HIV doctors outside the Kaiser system. The physician's philosophy toward patient care is another important consideration: patients may want a doctor who shares their views on alternative treatments, experimental therapies, and the role of the patient in his or her healthcare. Patients can discuss these issues during their first meeting with their doctor.

Changing Doctors at Kaiser

To make this decision, a patient should evaluate his or her physician on smaller issues: does the physician treat the patient's health problems aggressively, or take the "wait-and-see" approach? Is the doctor aware of new developments in HIV treatment? Is he or she able to educate the patient on clinical trials available inside and outside the Kaiser system? If a patient is dissatisfied with his or her doctor, s/he should try to switch doctors while feeling well, rather than trying to change during a crisis. Kaiser patients who want to change primary care physicians must often wait six weeks before they can be seen by the physician they have chosen, if that physician is accepting patients at all. However, patients can put themselves on multiple waiting lists and wait to decide when their name comes up.

Some patients see a physician outside the Kaiser system in addition to their Kaiser doctor, if they can afford it. This doctor can keep separate medical records and aid the patient in a crisis if he or she needs swift action that Kaiser is unwilling to provide.

"When my lover was sick, Kaiser couldn't find a cause for it," commented Bill Thorne of ACT UP/Golden Gate. "His outside doctor saw him and treated him presumptively for MAC, and he got better pretty quickly. Without that outside visit, he would have been sick for weeks."

Patients who cannot afford a second doctor can sometimes "bank" a visit or two by working out payment arrangements in advance with a San Francisco specialist. "It's great to know that when the chips are down, I've got an AIDS expert who can swoop in and monitor things," commented Thorne.

Some people with AIDS also use a second doctor so that they have a second set of medical records to enter in a clinical trial for which they might not qualify with their Kaiser records.

What If You're Sick Already?

For patients who need to change doctors while they are sick, the Kaiser system can prove more difficult to negotiate. Patients and their advocates may need to insist on an immediate change if their health considerations grow urgent. Kaiser member Edward Zold called Kaiser medical officials daily for two weeks in order to switch physicians for a friend who was getting the "wait-and-see" approach for his pneumocystis pneumonia.

"I woke up every morning and began my day by yelling at Kaiser," he said. "I started with Billy's doctor and worked my way up to the head of medicine until I got results." Kaiser switched the doctor.

If a patient is sick and feels that he or she is not receiving adequate care, it is important to demand aggressive treatment and to see a specialist or change primary care doctors if necessary. Patients who feel unable to do this should ask an assertive friend to accompany them to doctor's appointments to advocate for immediate, appropriate treatment. Patients and their advocates need to find out what the "first line" therapy for a particular problem is, and what options they have if it fails. While doctors should know these things, unfortunately sometimes they do not. Kaiser uses no recommended Standard of Care for HIV disease, and patients receive screening tests, prophylaxes, and treatments according to timetables that vary widely from patient to patient.

Therefore, patients need to educate themselves about Standards of Care for HIV. For example, many doctors believe that patients should receive CMV screening every three months if they have fewer than 100 CD4 cells. Armed with this kind of knowledge, patients can insist on vigilant care from Kaiser.

"The trick is to know what you need and then go in there and demand it," offered Thorne.

Or it may be time to see that outside doctor. ACT UP/Philadelphia (215-731-1844) publishes an easy-to-use, well-researched Standard of Care document for all stages of HIV disease, available in English and Spanish. The Project Inform hotline (1-800-334-7422) and treatment newsletters such as AIDS Treatment News are good sources for information on new therapies, clinical trials and other treatment issues. AIDS Treatment News is available online, in newsletter form, or as an indexed book published by Alyson Press.

What If I Have To Go to the Hospital?

Patients should try never to go to the Kaiser emergency room alone. Each patient there needs a vocal, aggressive advocate, whether it is the patient's Shanti volunteer, mother, friend, or lover. Pick this person for their assertiveness, not for their love of you. This advocate, ideally chosen in advance, can be invaluable in monitoring the patient's condition, helping to ensure that he or she receives appropriate attention quickly, and connecting the patient to friends and relatives outside the emergency room. If the patient is admitted, the advocate can help organize a support team to help monitor care while the patient is in the hospital. A patient with vocal advocates may be less likely to receive inappropriate care or be shuffled aside.

Copies of ACT UP/Golden Gate's article, "How to Advocate for Yourself in the Hospital" is available from ACT UP/Golden Gate by calling (415) 252-9200.

However, patient education and advocacy are not enough in some situations. For example, Kaiser has refused to pay for viral load testing. Human Growth Hormone, used to treat wasting syndrome, is also off-limits to Kaiser AIDS patients, even though two out of the three AIDS-related deaths that take place in San Francisco each day occur due to wasting.

Interestingly, Human Growth Hormone is available on MediCal, and indeed some San Francisco residents prefer the indigent care available through the city's public health system to care at Kaiser.

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Always watch for outdated information. This article first appeared in 1995. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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