World AIDS Day, part two

jjYesterday was World AIDS Day. It was a day to remember the many who have been lost to this terrible disease and to feel hope that a cure can be found to HIV/AIDS. As of now, HIV can be controlled with medication, much like any chronic condition, but it cannot be cured. Because my knowledge of issues surrounding AIDS/HIV is somewhat limited, I asked my nephew, James Thompson, a few questions about living with HIV/AIDS. James has developed an expertise in this area and he works at Evergreen Health Services in Buffalo, formerly known as AIDS Community Services. James graciously provided me with enough information for a two-day series on living with HIV/AIDS. For that, I am very grateful.

Many of us have felt the loss of friends and family keenly. I remember a fellow student, whom I met in language school in Antigua, Guatemala, in 1987. She told me that her brother, who lived in California, had worked as a chef until he was stricken by AIDS. There was so much talent lost, so many hearts broken. 

But, today, we have hope. Hope that we will not lose our talented, creative, well-loved family members and friends and colleagues.

Below are some of James' recommendations on how to live with HIV. It is not always easy. There are challenges and hurdles, but it is definitely possible to live a full and healthy life as an HIV-positive person.

)      Challenges that people with HIV face in America.

a.       While the possibility of living a full life is well within reach of many people with HIV, there are many challenges associated with living with HIV.  Stigma about HIV still abounds in many parts of the country and in many social, secular, and religious spheres.  Most people know that you can get HIV as a man having sex with other men, using injection drugs and sharing your needles with other users, and having lots of sexual partners.  Those behaviors are stigmatized by many people in the country still today. 

b.       It is very important to talk with your family about what living with HIV means.  It is by no means unheard of to be ostracized and disowned by your family members because they think that your HIV diagnosis means that you are living a sinful life and that you deserve the disease you received.  HIV can happen to anyone, and it is not a moral failing that someone gets HIV.  You may have a new partner whom you trust, but they held a big secret from you about their own HIV status because they thought you would turn them away, only to have sex with you and give it to you unintentionally.  And apart from family, friends and acquaintances can harass people living with HIV and judge them horribly for their disease. 

c.       Dating can also become more difficult when you have HIV.  As most any relationship has a sexual component to it, someone might like another person and really feel an emotional and physical connection, only to turn them away because of their HIV diagnosis.  People still have the outdated, stigmatizing attitudes that if you have sex with someone who has HIV, then you’ll get the disease yourself, and therefore that HIV+ person is “unclean” in some way.  That is not the case at all.  Condoms and other forms of protection do need to be used correctly and consistently, but that is sufficient to not transmit HIV to someone else.  HIV cannot be transmitted from hugging, kissing, using the same toilet seat or drinking glass, or any other type of contact that is not sexual fluids or blood.  Dating with HIV can be harder and take longer because you need to find that special person who connects with your soul, and that someone should be able to look past your diagnosis and express their love to you anyways.

d.       Having an HIV-positive sexual partner doesn’t even have to be that hard anymore, anyways.  Since 2012, the PrEP treatment has been available, and now locally in Buffalo, hundreds of people are on the medication.  Standing for “Pre-Exposure Prophylaxis,” PrEP is a synthesis of the existing HIV-medication Truvada that was found in studies to not only treat HIV for people with the disease, but if taken daily, a person without HIV can take Truvada can be exposed to HIV but not develop the disease.  That allows for sero-discordant couples to have unprotected sex with each other, knowing that the HIV+ partner will not pass the disease onto their partner.  It also allows people who are in the bar and club scene to have that extra level of protection when they find new partners to know that they will not get HIV from their sexual encounters. 

e.       Young people

                                                               i.      Living with HIV used to be a death sentence in the 1980s and into the 1990s.  That is much less likely today with the different kinds of medication available.  That does not mean that we as a society should get complacent about the risks of HIV.  People of a certain age who were adolescents and adults during the early AIDS epidemic were told to use condoms when you had sex or you were going to die.  That was fairly true of the time, and it led to two full generations of people to really establish safe sex practices, awareness of needle sharing in the drug use community, and how to talk with sexual partners about the dangers of HIV.  In addition to the scientific breakthroughs in HIV treatment, the public health efforts to really drive home the message of safe sex and safe practices to protect yourself from HIV were huge contributors to the dramatic reductions in HIV through the early 2010s.  Now, the message today is one of hope, that you can get on medications and live a full and healthy life even with HIV.  That is an inspiring message for everyone to hear, but it means that young people today are hearing that message of reassurance and turning it into complacency.  The fastest-growing age bracket of new HIV infections today is young people, aged 13 to 24.  These kids grew up in an age where HIV was no longer the threat that it used to be, they were not raised in an age where you had to wear condoms or you would die, so they are not practicing those same safe-sex practices to keep themselves from getting HIV at the same rates as people their age might have done earlier in the AIDS epidemic.  Being diagnosed young raises a lot of concerns because parents might be very hostile and judgmental of a teen who contracts HIV and lead to a rough living situation and possibly not getting the care that they need.  Young people today need to know that HIV still exists and that even if you can live with it, you’re much better off not getting it in the first place.

f.        Health insurance

                                                               i.      People with HIV can have very different experiences with attaining health insurance state by state.  Some health care providers try to deny you health care if you have HIV.  Although that is technically illegal in many states, insurance companies will instead try to charge you unaffordable premiums or deny your ability to have certain medicines covered by insurance.  Doctors can create a hostile environment for your care if they are not supportive and understanding of your condition, making it difficult to have productive and supportive conversations with them about your health concerns.  Not having a culturally competent physician is a huge barrier to many people with HIV, who might also face stigma in the doctor’s office because they are LGBT or a substance user. 

                                                             ii.      Many poorer people who have HIV must rely on Medicaid for their care.  This means that even if they are healthy and active enough to work and get ahead in life, if they were to take a job that put them over the Medicaid income threshold, they would be on their own for providing for their health care needs, and they would enter a world of health insurance where premiums would become prohibitively expensive, so they have to stay unemployed or underemployed in order to get adequate health care.

2)      Where can people go for support?

a.       There are many ways that people can get support while living with HIV.  There are many HIV support groups around Western New York and around the country at places such as Evergreen Health, where HIV is a cornerstone of the care that the agency provides.  Support groups are very important for people so that they know that they are not alone and that they can relate their concerns to people who understand.  Finding a culturally competent physician and team of medical professionals is equally important so that you have a supportive medical team in your corner to help address all of your concerns.  You must have an HIV-specific specialist, as anyone with other chronic diseases needs a specialist, to be a part of your medical team, and you need to talk with your doctor about your adherence to the medications, side effects you’re experiencing, or if you’re having trouble with your insurance provider on covering medications.  For those who HIV-positive and in the LGBT community, finding LGBT support groups can become very important to share concerns with like-minded people and learn tips on staying healthy and well-adjusted in society.  Younger people who are HIV-positive can also learn a lot of valuable lessons from older people who are HIV-positive and survived through the worst of the AIDS epidemic and are still here with us today.