Once You Know Your Status, Know Your Services

Learning you have HIV can be some of the most life-changing news you may ever receive. It takes time to cope and time to accept. Even after knowing your status, you now have many thoughts of where you are going to get care or if you can even afford it. Given stigma and lack of knowledge, it’s understandable to have these thoughts and feelings. The important thing you need to remember: You are not alone.

HIV care can be extremely expensive on paper, and if you have no insurance it can be even scarier. Thankfully, there are organizations that provide services to those who are uninsured or underinsured. I do need to give a disclaimer: I am only familiar with specific services in the United States and cannot speak for other countries. However, no matter where you live, you need to know where to find help.

Research HIV health and social programs

Lack of information and discussion of HIV in the general media leaves many services hard to find if you don’t know where to look. Thanks to the internet, however, it is much easier to stay informed.

Don’t be afraid to research. A solid first step may be to visit your local health department. There you may be able to find out who your local Ryan White service provider is and you can then be linked with a case manager that can assist you further in your search.

Ryan White services

Ryan White services cover a HUGE umbrella of assistance. The biggest help is assistance in paying for doctor appointments and lab work needed to monitor your HIV. Your primary responsibility for yourself is getting into care and staying into care.

It’s very true that HIV is not a death sentence and is an extremely manageable condition, but you need to actually manage it. All of the wonderful information about Undetectable = Untransmittable (U=U) means nothing for you if you don’t do all you can to take your HIV care seriously.

Find ways to make things more manageable

Living with HIV adds a large burden to your life. One of the best things you can do for yourself is to find ways to relieve that burden. You can find ways to temporarily help you pay your rent and utilities when times get too tough or, depending on your area, find permanent housing assistance.

You can also be directed to mental health services, dental services, and even food bank assistance. Never be afraid to ask for help. My motto: You can’t win the lottery if you don’t play.

AIDS Drug Assistance Program (ADAP)

As for medication, the federally funded program know as the AIDS Drug Assistance Program (ADAP) is available for those that are uninsured and under-insured (meaning you have insurance, but it may not cover the meds you need). This program provides medication without payment from the client.

Depending on your circumstance, ADAP Premium Plus may be an option where ADAP covers your insurance premium for employer-provided health insurance. Never avoid making the move to get into care just because you heard how much the medication costs. Yes, they are expensive, but you don’t have to be the one that pays for them.

Aging out of Medicaid

Now, I would be doing the community a disservice if I did not talk about youth (younger than 20 years old) living with HIV that are about to age out of services like Medicaid. Timing is everything and there needs to be a plan in place on where to go to continue to receive assistance. Do all of your researching several months, maybe even a year ahead of time. Make contacts and have everything that you can plan for already in place. You don’t want to wait till the last minute; anything could happen that could cause an interruption in your care.

What to remember when enrolling in a new program

Things to remember to bring for your initial enrollment:

  • some form of identification
  • proof of positivity (any lab work that confirms you are living with HIV). Undetectable labs don’t usually count so you may need to get a lab-based antigen test for confirmation; hopefully, the service provider will assist with this)
  • proof of residency (any kind of utility bill to your current address with your name on it)
  • proof of income (last two pay stubs). If you’re not employed: a letter from whoever is providing you with food and housing helps)
  • proof of insurance, if any. If you are employed: you need a letter from your work stating why you have no insurance).

Be as prepared as possible to make your enrollment easier. Please, all of you out there that may be reading this and not in care: I know HIV can be terrifying and the enrollment process for some of these programs can be intimidating, but it’s all worth it when you are in care and working to be as healthy as you can.

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