But now, almost 20 years since the first HIV medication came on the market, the number of possible drug combinations can be overwhelming. The intricacy of treating HIV cannot be overstated, causing overall care to be problematic and sometimes substandard.
Few HIV practitioners have the time or wherewithal to keep up with the latest cache of information. People with HIV themselves cannot possibly stay completely informed. Pitfalls abound.
Doctors are also rushed, locked into the time constraints of managed care. They also have more patients, since the field of HIV medicine is getting smaller due to competition and market forces.
In some cases, unfortunately, there is complacency and less concern for the whole person that results in a lack of optimal care. There is such a focus on the virus that sometimes the host is forgotten. STD infection, re-infection, depression, substance use and co-infection are some pressing concerns and issues with HIV-positive people.
Nevertheless, the guidelines are the best amalgam of HIV treatment information we have and can be helpful, especially for the inexperienced medical provider. They are continually updated to keep up with the current information.
Balance must be weighed by staying current with the actual research and staying unbiased despite the aggressive marketing.
Among the questions I get asked are the following: What is the best drug combination for starting initial therapy? Which drugs are less likely to cause lipodystrophy? What drugs are safest and which will interact and be cross-resistant? Should I take a newer once-daily drug or stick to my old twice-daily regimen? Should I boost my protease inhibitor? Are the new drugs necessarily better? Safer? Can I stop my treatments now that I am doing so well?
I asked if the doctor had spoken to him about Fuzeon or the new protease inhibitors he had not tried yet. My concern was that there may have been reluctance in prescribing the twice-daily injectable Fuzeon. Whatever the case, I saw that Lou had lost a lot of weight and with all I knew, was willing and ready to switch to some new options that would most likely benefit him.
There has been great impact in treating late stage HIV in the past years with new classes and drugs that are not cross-resistant with each other. It is worrisome that less aggressive doctors would hold off these new options for someone like Lou unless there is some other medical condition or drug interaction issue. I urged him to force the issue with his doctor.
On the other hand I have heard from people that doctors have wanted to switch to a new drug when according to them, it appeared there was no need to. Most of the time these people were very stable and doing well, with undetectable viral loads, stable CD4 levels and no sign of side effects. They had no indication of why their docs wanted them to switch. Many patients for various reasons will not refuse a doctor's wishes.
On the other hand, with rising lipids that haven't been brought under control, and especially with other cardiac risk factors, switching to Reyataz might be a good strategy to try.
Providers also must not assume that because a patient is a substance user or person of color that they are any less likely to adhere to their medications.
One e-mail response I received was about a doctor incorrectly prescribing Trizivir for a treatment-experienced person with documented drug resistance. While I understand the need and desire for treatment simplification, at what expense should that be done? Are doctors at ease knowing that their patients are on a sub-optimal regimen simply because they are comfortable that they can adhere to it? Are treaters too busy to work with their patients on treatment adherence? Or again, do they just not have time?
The Videx/Viread interaction was discovered after this backbone combination was in widespread use, the thrill being that they are both once-a-day drugs. I heard about these interactions through the grapevine before the news was out. Even today I hear of some doctors not warning of potential problems with Videx/Viread.
It baffles me that there are people still using Zerit even though we know it is one of the causes behind lipodystrophy. Even Retrovir has been correlated with lipoatrophy, but docs are used to prescribing it rather than newer, safer, less toxic drugs.
There are also ways to manage elevated lipids besides use of statins, but once again docs rely upon a pharmaceutical intervention rather than having a discussion about exercise, nutrition, and complementary therapies.
Treatment activists are now demanding that pharmaceutical companies perform interaction studies with all antiretroviral drugs and concomitant medicines used by people with HIV, long before approval.
Some doctors may not want to "lose" their patients to a clinical trial, but a study should never be a substitute for good clinical care.
My survival is based on the availability of new treatments through clinical trials and it is known that research institutions are clamoring for new recruits. Minority populations also protest there are not enough minorities enrolling in clinical trials. Recruitment by all people affected by HIV is vital for ongoing treatment success and scientific breakthroughs.
While it may be necessary to stop medications due to toxicity, the word is not final on interrupting HIV meds, and we will not know more for at least another year. I continue to speak to people who stop their meds out of the blue.
The best way to stop therapies is to enroll in a STI clinical trial where monitoring is frequent.
Patients need to know that they should also discuss any new treatment with their pharmacist or any other medical provider, such as the Physician's Assistant or Nurse Practitioner.
There are countless variables to misinformation in HIV treatment and this article certainly cannot address everything. However, the point here is to get people with HIV and doctors to communicate with each other and to do their homework. Stay current, and stay informed.
As always, it is time to take stock of all the HIV treatment advances, look at what has worked and what hasn't, evaluate what can be changed and advocate for better research, as well as patient and provider education and support. Providers and patients should acknowledge and face the gaps in understanding and work together as a team to attain optimal health in 2006 and beyond. The question becomes: how can we all do a better job with keeping up with all the changes and work as a team to stay as healthy as possible!