When you are told you are HIV positive, of course, it's not great news. But please...PLEASE don't view it as the end of the world. We live in a different time than when the movies you have most likely seen were set. Medical staff and researchers are much more knowledgeable about HIV and how it works. It's not a new disease anymore so many support organizations and systems have been around for a long time and can help you with any guidance you may need - there's nothing you can throw at a large AIDS Service Organization (ASO) that they haven't seen before.
These days, it's not only pretty much spot on but healthier to view HIV as a chronic yet manageable disease, although there are some exceptions that separate HIV from most other chronic diseases.
To begin, you should know for your own protection and the protection of others around you how HIV differs from more common manageable chronic diseases like diabetes.
HIV is infectious and can be spread to others through blood and bodily fluids. This can happen most often through sex, intravenous drug use and accidental exposure to HIV-infected blood.
Another differentiation from most other chronic diseases is that there is still a large stigma attached to HIV. Understand that when letting people know you are HIV positive, it can affect relationships, the workplace and other aspects of your life.
Become An HIV Expert
You may not become an expert overnight, but just like it's so much easier to manage HIV these days, it's also so much easier to educate yourself with all of the sources and internet options available. The more you know about HIV - how it works; how your meds work; how your body reacts to treatment and all of the other aspects to your staying healthy, the better off you'll be.
The Good And Bad Of The Internet
If you have access to the internet, it's one of the best and quickest ways to get HIV information. But make sure that you check your sources if you're unsure about the information your getting. It helps to go to legitimate, well known sites (some of which are listed at the end of this article). Understand that there is a lot of misinformation on the internet that is just plain wrong. Also, because treatment options and availability differ greatly around the world, make sure the information is U.S.A. based.
Another aspect of the internet to be wise about are the off-shore discount pharmacy come-ons and drug scams. You've heard the adage "If it sounds too good to be true, it probably is, "well, in this case, it is and the phony, illegitimate drugs can have horrible consequences. Don't risk your health by using a questionable drug provider.
What Is HIV And How Does ItWork?
HIV stands for Human Immunodeficiency Virus. It is NOT AIDS. Left untreated, HIV can lead to AIDS. The HIV virus weakens your immune system by destroying cells that fight illness and infection. It attacks T-cells or CD4 cells which are key in fighting disease. The HIV virus replicates and destroys these cells until you have too few of them for your immune system to work properly. The average person without HIV has between 500 and 1200 CD4 cells. Someone with HIV, according to current DHHS guidelines should start therapy when their CD4 count gets to 350 (although many doctors recommend treatment before that point). If your CD4 count gets down to 200 or you develop an opportunistic infection, you are then considered to have AIDS.
Treatment Options, Starting Treatment And Adherence
Although the general approach is the same as when HAART was developed in 1995, the medicines involved have improved tremendously. When HAART was first introduced, people had to take an enormous amount of pills, on a strict time schedule, some with food and some without. And some of the pills had very unpleasant and even disruptive side effects. Over the years, researchers have developed better and better HIV meds and even the older medications have been improved to eliminate some side effects and lower pill burden.
Now several HIV med options have been combined so that the "cocktail" can be taken in just one or two pills, taken just once-a-day. Your doctor will work with you on an individualized regimen that will be based on several factors including other medical problems you may have, your test results and lifestyle and convenience issues to name a few.
Your doctor will also work with you in determining the right time to start your regimen. Depending on how soon in the HIV lifecycle you are diagnosed, you may not have to begin a regimen right away.
Make sure you are ready mentally, physically, emotionally and even financially to begin because adherence (taking your meds on time, every time) is key. If you have issues with addiction, depression, financial instability or anything that might get in the way of adherence, get help and support to deal with it. The HIV virus can gain resistance to a regimen if adherence falls off and while there are options if there are issues with resistance, it's best to keep all the options open by being responsible to yourself in the beginning.
Assembling Your Support Team
Surround yourself with the best people, who you get along with, who you trust will give you the best advice and positive encouragement. Remember you have the ultimate say in your treatment but don't go it alone!
Select A Doctor With HIV Experience
This is very important! You're going to need a doctor who treats patients with HIV and is up on all the current issues and the current treatments. If you live in a medium to large-sized city, one shouldn't be hard to find. If you live in a smaller town, it will be worth the drive to find a specialist if your town doesn't have one. You are in control. You can interview the specialist to make sure you get along, that he treats people with HIV and that his staff can help with any other of your needs.
Find An AIDS Service Organization (ASO)
An ASO is really going to be invaluable to you. As with your specialist, if there isn't an ASO where you live, find a close one and drive to it.
The ASO will be able to help you with a wide range of needs. Depending on its size, an ASO can recommend specialists like primary care physicians, dieticians, dentists and pharmacists; offer support groups, help you navigate government and funding red tape and might be able to set you up with a case manager who can assist you over the phone if you live a distance away.
Family And Friends As Your Support Group.
Confiding your HIV status to family and friends, because of the stigma still associated with HIV, can be a big and difficult decision. Make sure you are ready to disclose and as sure as you can be that your friend or family member will be sympathetic and encouraging. Having the support of family and friends can offer you peace of mind like nothing else.
Paying For Your HIV Meds
You're probably aware that HIV medications are expensive. But, there are a lot of resources available to help you pay for them. As noted previously, stay away from off-shore internet pharmacies that scream deep discounts, the meds at best can be ineffective and in some cases, harmful.
The best place to begin is at your ASO. The ASO will set you up with either a case manager or a benefits specialist that will guide you through all of the red tape and see what you are eligible for. If you have not already looked into the Affordable Care Act (ACA-or-Obamacare) your case manager or benefits specialist can also help make as much sense to you as anyone can as to how the ACA might benefit you.
Here are some options to help you pay for your HIV care:
Right now, if you have good and affordable health insurance that covers HIV treatments you are fortunate. Using this as a first option, allows you to keep working as usual and getting on with your career. As we move into 2015, the Affordable Care Act should make health insurance more of a first-line option for people with HIV.
Although the Affordable Care Act can be difficult to understand, the ACA will solve many issues that people living with HIV currently face. People with incomes above 138% of the Federal Poverty Level (about $15,000 per year) who have had problems getting insurance are able to purchase it through a marketplace called an Exchange.
The Exchange is a place where people can compare plans and choose the one that is best for them. If an individual's income is below 400% of the Federal Poverty Level (about $44,500 per year), they will receive financial help from the federal government to buy their insurance.
AIDS Drug Assistance Program (ADAP)
If you don't have prescription coverage and your income is relatively low, you might be able to get help through ADAP. ADAP is a federal program established through the Ryan White CARE Act, but it is administered by each individual state. The formularies (which are basically what is covered) varies greatly from state-to-state as do qualifiers such as your income. Some states do currently have a waiting list. The best list of all 50 states ADAP information can be found at www.hivpositivemagazine.com/adap.html.
Disability And Medicaid
If you are disabled and on Supplemental Security Income (SSI) from Social Security you may also qualify for Medicaid (some states have different names such as Medi-Cal in California). Medicaid will pay for your care and your prescription drugs.
With the Affordable Care Act, people with incomes below 138% Federal Poverty Level will be eligible for Medicaid. For the first time everyone will be eligible regardless of disability status. Also people will be allowed to have a savings account of any amount and still qualify. As of now, it is unclear what will happen if there are states that do not choose to expand their Medicaid programs.
It is very important to note that health care reform does nothing to help people with HIV who are undocumented. It does not end the five-year Medicaid waiting period for most new immigrants. However, new immigrants will be able to purchase insurance coverage in the Exchanges.
If you've been getting Social Security disability benefits for more than 24-months or are over 65 you may be eligible for Medicare. For more information on Medicare, go to www.medicare.gov.
If you are a United States Armed Services veteran, you may qualify for health care through the VA. For more information on VA coverage, go to www.va.gov or to your local VA hospital.
Patient Assistance Programs
All pharmaceutical companies that manufacture HIV drugs have patient assistance programs that provide low cost drugs for people who cannot afford them. Qualifications for these programs differ. For a listing, go to www.needymeds.org.
Partnership For Prescription Assistance
This is a single point of contact for over 475 public and private assistance programs as well as over 200 pharmaceutical company programs. Call 1-888-477-2669 or go to www.pparx.org for more information.
Where Do You Go From Here?
Other online resources to look into for very good information are:
Copyright 2019, Positive Health Publications, Inc.
This magazine is intended to enhance your relationship with your doctor - not replace it! Medical treatments and products should always be discussed with a licensed physician who has experience treating HIV and AIDS!