One physician's experience with 'cocktail' therapies
New AIDS treatments show dramatic results, but reveal quagmire of costs, treatment complications
From the May 1997 ACP Observer, copyright © 1997 by the American College of Physicians.
By Donna Elaine Sweet, FACP
I am currently caring for a 31-year-old patient who has been HIV positive since 1987 and living with AIDS for several years. A year ago, he began doing poorly and became disoriented and confused, developed neurological difficulties and was eventually diagnosed with progressive multifocal leukoencephalopathy (PML). His viral burden was extremely high, and his CD4 count was 10.
The patient had read that antivirals caused more problems than the disease itself and had always declined to take them. After his family convinced him to try triple drug therapy, however, he gained 30 pounds and his CD4 count increased to 325. While I have never seen PML regress, this patient is now traveling and talking about returning to work.
The patient's improvement is a dramatic example of the new direction in HIV-AIDS treatment. It uses the "cocktail" or multidrug therapy approach therapy that I have dreamed of since I began caring for people with HIV-AIDS in 1985. And while these new regimens are producing dramatic responses, they are also causing new complications and dilemmas in treating HIV patients.
For clinicians, the easiest part of the new HIV treatments is writing the prescription. That's because caring for people with HIV-AIDS is time-consuming. Although these individuals constitute only 25% of my patient population, caring for them takes 75% of my time. In addition to direct care, there are practical matters such as helping patients find the funds to pay for drugs and making sure that they remain in the system to receive care.
A truly involved physician is forced to get involved in the economics, politics and bureaucracy of HIV care, something not everyone is prepared to do. As a teaching physician, I know that medical school does not teach about the politics and finances of medicine, which is why residents need to see a good role model and get beyond just writing the prescription.
HIV is a disease unlike others because the economics are overwhelming. Antiretroviral drug regimens alone can cost more than $1,200 a month. Then there's the cost of the office visits. At least half of my 450 HIV patients don't have insurance or qualify for Medicaid, so we often tap into Ryan White funding. The program perpetually faces financial shortfalls. While this has always caused problems with continuity of care, the consequences of suspending therapy for even a short time are even more dire now: Starting and stopping protease inhibitor drug regimens allows the HIV virus to rapidly become drug resistant.
Additional funds from a Ryan White Title IIIb grant help fill these gaps in care. For example, patients who are waiting to be approved by Medicaid but have already been approved for Ryan White funds can begin therapy immediately because the Ryan White Title II program will pay for their drugs. In addition to medications to treat HIV, patients may also need pain medication, which is not covered under Ryan White Title II, and help paying for office visits. Money for these medications and services is available through Ryan White Title IIIb funding.
I work hard to fill in the gaps; my office created a fund we call "Ain't She Sweet" to provide emergency funds for patients until they are eligible for aid from other sources. Other local foundations help by providing additional emergency support such as utility and rent assistance, food pantry items, etc., to help provide for basic needs.
I have also worked at both state and federal levels to improve funding in Kansas. I worked with former Sen. Nancy Kassebaum to change the Ryan White formula to improve the grant base for Kansas to reflect the state's current statistics; in 1992 there were 700 cases of AIDS in the state. In 1996 there were more than double that number.
Beyond the treatment of disease, there is also a need for education. I speak frequently at local high schools and work with youth in grades 7 through 12. Although there is more tolerance and knowledge than five years ago, high school students still want to know if condoms really work, if mosquitoes spread AIDS and if you can catch AIDS on an airplane!
There is confusion about the so-called "cure" for HIV. When you consider how teenagers think, you have to make sure that they don't view new cocktail therapies as a cure, that undetectable levels of virus in the blood do not equal eradication of the virus. You need to emphasize that individuals who are not infected need to continue to take precautions against sexual transmission of the virus.
Educating patients and their families is also extremely important. You need to explain the disease process and emphasize that not everyone responds to drug treatment in the same way. Those who do not respond to the newly advertised therapies are understandably confused. Providers must take the time to explain to patients why a therapy did not work, and that if one cocktail doesn't work another can be tried. There are side effects of all combination therapies and it may take time to find the right combination. Physicians must also emphasize that cocktails only work for a certain percentage of people.
HIV is a frustrating disease, and patients do give up. Those for whom the cocktails do work face a huge challenge—compliance. About a third of my patients respond and adhere to the regimen; another third get some benefit but give up, and another third just cannot do it. Some of the drugs require an empty stomach every eight hours. Sometimes even the best-intentioned patients can quickly become noncompliant.
A good example is a 16-year-old hemophiliac AIDS patient who was doing poorly under alternative care. He weighed 87 pounds, his CD4 count had fallen to 6 and he had a viral burden of more than 400,000. The cocktail therapy produced amazing results: The patient gained 20 pounds, returned to school and begin playing golf again. But he stopped drinking large amounts of water each day and developed kidney stones. He now is on a different regimen that may not be as effective.
Cases like these demonstrate why continued research, both basic and clinical, is so necessary to develop new and better treatments. HIV is truly a long-term chronic illness, one that will continue to need fiscal, medical, political and research attention. At times treatment can be disheartening, but the fact that we finally have treatment options is encouraging. The drugs we have are truly effective and allow patients near death to come back and live productive lives.
But no matter how far we go in treating HIV, one question remains: How long will it take for the virus to outsmart us again?
Dr. Sweet is ACP's Governor for Kansas, professor of medicine at The University of Kansas School of Medicine-Wichita and director of the Kansas AIDS Education and Training Center.
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