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Today, an HIV diagnosis is very different than it was even a handful of years ago. Because of advocacy, treatment options, financial options and healthcare reform, HIV has become a manageable chronic disease. If you learn about HIV and stay on top of it you can live a long and full life. As a matter of fact, research has been going in high gear to see what issues seniors living with HIV are experiencing – something that was not even imagined 20-years ago.

The basis of this article is to give you a little background and an idea of where to start in dealing with your HIV.

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.

What Is HIV And How Does It Work?
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
HIV Treatment has come a long way. In late 1995 a treatment protocol was developed that could keep people with HIV alive indefinitely. A “cocktail” of three HIV medications used in proper combination, technically known as “HAART” – Highly Active Anti-Retroviral Therapy – is still in use today.

Although the general approach is the same, the medicines involved have improved tremendously since 1995. 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.

Some meds 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.

Assemble 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!

Begin with selecting your HIV doctor.
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.

Next, find an AIDS Service Organization (ASO) near you.
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.

Enlist family and friends into 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.

Educate Yourself
As is the case with almost anything, the more you know, the better off you are. This is especially the case with HIV. Becoming knowledgeable will help you protect yourself and give you peace of mind. Know how the disease works, know your body and know your meds. Find out about possible drug interactions and even what kind of herbal supplements might weaken your HIV meds. Become an expert!

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. DO NOT buy deeply-discounted medications from off-shore/online retailers or pharmacies. At best, these can be ineffective which for people with HIV, makes them extremely dangerous.

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. Your case manager or benefits specialist can also help make as much sense to you as anyone can as to how the Affordable Care Act (ACA –or- Obamacare) might benefit you. Here are some options to help you pay for your HIV care:

Health Insurance
Right now, if you have good 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 2014, 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 will be able to purchase it through a new market place called an Exchange.

The Exchange will be 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 can have 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.
Beginning in 2014 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.

Medicare
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.

Veterans Affairs
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.

Don’t Stop Here!
Some other online resources to look into for very good and more in-depth information are:
www.hivpositivemagazine.com
www.aids.gov
www.cdc.gov/hiv
www.thebody.com

Copyright 2018, 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!