Section One: What Everyone Should Know
Part One of Three in Project Inform's "What You Should Know About When to Start and What Meds to Use" Booklet
Many Americans take their health care for granted. They don't think ahead about how they get their meds or what changes can happen to their insurance. Whether you like it or not, health care reform is here and it may change how and where you get your medical care. Overall, the care that HIV-positive people get after 2014 should be more secure and complete.
Stable Health Care
As health care reform moves forward, you may see some changes that could affect how you see your doctor, get lab work, fill prescriptions, or pay for co-pays and premiums. People who now use either private insurance, Medicaid or Medicare for their health care probably won't see big changes. Those who use Ryan White services will likely see more, and these changes will vary from state to state.
The most important thing you can do right now is to understand how your care is covered. Get up to speed about your current benefits. Then begin to learn the facts about health care reform because a tremendous amount of misinformation is being put out by people who oppose it. Consult www.hivhealthreform.org for facts and new state laws. Your doctor, your clinic and even support groups may also be helpful places to ask.
Stable Supply Of Meds
It's not uncommon for people to run out of one or more of their meds on occasion, but having a steady supply should be a priority rather than waiting until the last moment to get your prescriptions filled. Work closely with your doctor, pharmacist and even insurance managers.
Plan ahead for weekends, vacations, moves or other times when your regular routine is disrupted. Auto-refills or mail order refills can help with this, and sometimes can be done for 2 or 3 months at a time. Use cell phone or online calendars to remind you about your refills.
Work with your doctor to establish about a week's overlap so you always have seven or more days of backup in case of emergency. Refresh your emergency supply to avoid expired pills.
If you rely upon a public insurance program like ADAP, make sure you know when you need to re-apply. Be sure to keep up with enrollment requirements and any premiums or out-of-pocket expenses. Make sure you read, act on and file papers sent to you by these programs.
Main Points to Remember
Most people who take HIV meds will face a time when they have to switch one or more of their meds for some reason. Although people can feel anxious over this, we know a lot about how to do it safely.
It's important to know the reason(s) why you want or need to switch (see below). Work with your doctor about how changing one or more of your meds today might affect your choices over time.
You may have a hard time dealing with a short-term side effect after starting meds (such as constant diarrhea or rash) or a long-term side effect (such as diabetes). If side effects intrude on your quality of life or get worse over time, you may want to consider switching if the HIV drugs are causing them.
Cd4 Count Doesn't Increase
It's reasonable for you to expect a gain of 100 CD4s or more within your first year on meds. This may take longer for some people; for example, if you had a very low CD4 count before starting. If your CD4 count doesn't noticeably improve or even goes down, then you may need to switch.
Meds No Longer Control HIV
One of the main reasons why people switch a drug or even their full regimen is because of treatment failure. This is when one or more of your meds no longer control HIV. When this happens, HIV has changed its genes enough (mutated) to avoid the meds. As a result, viral load goes up.
Treatment failure is a serious situation. Major mutations mean the drug probably can't be used again. Minor mutations mean it may or may not be used again. Mutations can also lead to a whole class of drugs not being used. Getting a genotypic resistance test done (see below) will tell you about the kinds of mutations you have.
Simpler Regimen, New Drugs Available
If you take several pills each day, and especially if you take them twice a day, you may be able to find a simpler regimen. Also, new drugs will probably come to market over the next ten years that give you a chance to simplify your regimen.
Genotypic Resistance Tests
If your viral load becomes detectable over two or more tests, then a genotypic resistance test should be done. This is best done when viral load is 1,000 or more. The test will show which drug(s) HIV has become resistant to. Make sure these test results are written down in your medical file. This way, you and your doctor can review them and make better decisions about which drugs to avoid and which to try again if possible.
This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
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