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Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

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Recent Posts

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1
Insurance, Benefits Programs & HIV / navigating us healthcare
« Last post by Withau on Today at 06:09:36 am »
Greetings,

I've been living in Europe for 25 years and am approaching retirement age.  I'm getting pressure from family to return to the US, and one of my kids made a great offer for low cost housing in rural Wisconsin.

However,  I am riding an emotional roller coaster trying to navigate the US healthcare system.  I can't figure out what HIV therapy would cost me on Medicare,  and it's overwhelming trying to figure out which plan would be best. 

Currently I only need to have labs done every six months and I pick up a prescription for 3 months of Genvoya and a blood pressure med each quarter.  My total cost per year including everything is 40 euros. My health is good and life is pretty stress free.

Looking at the info I can find online I'm wondering if I am correct to think HIV Meds will cost me about 6000 dollars a year.  In addition it looks like I would have to take what I get - no choice on meds and there might be limited treatment options.

I would be truly grateful if anyone would be willing to share advice or experience on how to "afford" HIV.  I would love to be closer to family,  but returning to the US feels like a dangerous move! I can also use suggestions on the best places to live, or any other topics that come to mind.

Thanks for reading and stay well. 
2
Research News & Studies / Enochian BioSciences
« Last post by Matts on Today at 04:13:31 am »
Some news that give some hope. A Longterm Survivor with quite high VL even under ART became undetectable for months. Another "normal" ART patient had the same results.

"Enochian BioSciences announces Scientific Presentation of a Person with HIV Exhibiting Controlled Blood Levels of Virus for 255 Days Following Treatment with a Novel Cellular Therapy


Published: May 12, 2021 

 
LOS ANGELES, May 12, 2021 (GLOBE NEWSWIRE) -- (NASDAQ: ENOB) – Enochian Biopharma, Inc., a company focused on gene-modified cellular and immune therapies in infectious diseases and cancer, today announced the release of preliminary data relating to the use of a novel cell therapy approach in controlling human immunodeficiency virus (HIV) in humans. Dr. Serhat Gumrukçu, co-founder and inventor of Enochian BioSciences and Director of the Seraph Research Institute (SRI), presented the findings at the Annual Meeting of the American Society of Gene and Cell Therapy (ASGCT). Presentation can be found at https://www.enochianbio.com/about-us/collaborations/

A 54-year-old man, diagnosed with HIV in 1986, had persistent HIV detected in his blood, despite antiretroviral therapy. With approval from an Institutional Review Board, this single patient was treated with a novel cellular therapy of natural killer (NK) and gamma delta T-cells (GDT) – a small subset of immune cells that can be infected with HIV but could also be a key factor in controlling the virus. The NK and GDT cells were collected from a person who does not have HIV. Because the patient stopped antiviral treatment and received some supportive medication before the cellular therapy, the level of HIV initially increased, as expected.

However, HIV levels began to decline after approximately three weeks, and after 100 days dropped below the detection level of routinely used blood tests (20 copies/ml). HIV levels in the patient’s blood have remained at or below detection for an additional 255 days, all while the patient has not been taking antiviral medication.

This innovative cell therapy could be a potential strategy to achieve a “functional cure” for HIV. This could potentially allow persons living with HIV to stop antiviral treatment for extended periods of time. Dr. Gumrukçu and SRI are currently pursuing a regulatory pathway with the FDA to study the approach in more patients. Enochian BioSciences holds the exclusive license for the proprietary technology.

Dr. Mark Dybul, a prominent global HIV expert and Executive Vice Chair of Enochian BioSciences said, “As an HIV researcher, clinician and former leader of large, global HIV treatment programs, I am excited by these results. Although antiviral treatment is very effective, it is expensive and some patients cannot, or do not want to receive it. This, combined with the fact that access to antiviral treatments is limited, creates a significant unmet medical need. While the findings presented are preliminary and in one person with HIV, I’m hopeful that with further testing in larger patient populations, SRI’s novel cell therapy approach could one day be an alternative HIV treatment to many.”

https://www.biospace.com/article/releases/enochian-biosciences-announces-scientific-presentation-of-a-person-with-hiv-exhibiting-controlled-blood-levels-of-virus-for-255-days-following-treatment-with-a-novel-cellular-therapy/
3
I’m considering that. If I quit holding onto the money for a down payment and just rent a new place, I can pay off my credit card and pay most of my car loan off. Plus get a new iMac. I’m thinking…

If you spend down the money, you probably wont lose medicaid.   This might be the time to get those dental implants, a used car etc.  Again talk to a case manager at an Aids Service Organization.
4
I’m in Missouri. I talked to my case manager and she wasn’t a lot of help. All she indicated is that it doesn’t affect my status with her but that I might lose Medicaid coverage. I have enough debt to offset this money, I still have a negative net worth. But the debt is manageable without throwing a chunk of money at it that might be better used as a down payment on a house.

Trying to get a loan with just SSDI as income is impossible. But that’s a separate issue.

Sorry for  your loss.

 Where do you live?

(Snip)

One of the other users here works for an ASO in the southeast.   He can also point you in the right direction.

What State are you in?   People in your state can help you.
5
Do I Have HIV? / Re: Screwed up bad
« Last post by Jim Allen on Yesterday at 01:13:39 pm »
Hiya.

Look despite whatever nonsense you have read most common would be no noticeable initial/seroconversion symptoms whatsoever for HIV and as said nothing you mentioned is HIV specific and some of it would have nothing to do with a recent HIV infection at all.

Now, see your doctor and treat whatever is making you sick. Please don't ask again!

The encounters mentioned here were not an HIV concern, continue to use condoms and test for STI's & HIV yearly.

Jim
6
Do I Have HIV? / Re: Screwed up bad
« Last post by Ohno on Yesterday at 01:08:27 pm »
Would it be possible to experience symptoms after  9 months and also does the ars flu usually last 4 months ? Or longer coz my one did.
7
Do I Have HIV? / Re: Screwed up bad
« Last post by Jim Allen on Yesterday at 12:51:41 pm »
Hiya.

Read your post, nothing you mentioned is HIV specific and some of it would have nothing to do with a recent HIV infection at all. See your doctor and treat whatever is making you feel unwell

Regarding the encounters mentioned, receiving a blowjob is no HIV risk to you whatsoever.

As for the intercourse, HIV can't transmit through an intact latex or polyurethane condom. If a condom fails during the act of intercourse, it's obvious. There is no reason to stress or test outside of the standard yearly routine as long as this obvious issue did not happen.

Here's what you need to know to avoid HIV infection:
Use condoms for anal or vaginal intercourse, correctly and consistently, every time, no exceptions. Consider talking to your health care provider about taking PrEP going forward as an additional layer of HIV protection.

Keep in mind that some sexual practices which may be described as ‘safe’ in terms of HIV transmission might still pose a risk for transmission of other STI's, so please do get fully tested regularly and at least yearly for all STI's including but not limited to HIV and test more frequently if unprotected intercourse occurs

Also, note that it is possible to have an STI and show no signs or symptoms and the only way of knowing is by testing.

Kind regards

Jim

Please Note.
As a member of the "Do I have HIV?" Forum you are required to only post in this one thread no matter how long between visits or the subject matter. You can find this thread by going to your profile and selecting show own post and it will take you here. It helps us to help you when you keep all your thoughts or questions in one thread and it helps other readers to follow the discussion. Any additional threads will be deleted.
8
Do I Have HIV? / Screwed up bad
« Last post by Ohno on Yesterday at 12:47:22 pm »
I had sex with a sex worker  in feb last year (protected oral and vaginal).

I had sex with another sex worker in December ( protect oral and vaginal)

In November that year before the encounter with the second sex worker I started experiencing strange symptoms.
My hands and legs were weak. I was out of balance while walking. I got pins and needles on my hands and feet constantly. They also got numb frequently. I had mild body ache and shortness of breath.not COVID since I got tested afterwards.
Did not get anything else in December. I got nasuea and fatigue in jan. in feb this year I came down with a flu with server body ache ache, a body rash, and crazy fatigue and constant stomach upset. My body was burning mostly legs and arms .
The fatigue was insane.this lasted untill end of April. I still have the body ache and fatigue but less now. It was the longest flu of my life. Was this ars? My muscles are still weak and the fatigue is still there. I have not gotten tested since I was scared.

Is it possible to get ars after 9 months or did I seroconvert and not get any symptoms initially? And now I’m getting them.
9
Questions About Treatment & Side Effects / Re: Doctor Appointment
« Last post by lightalltheway on Yesterday at 08:59:07 am »
think of it this way: what are you expecting from your routine check-up?

have you remained adherent to your meds? have you had any other medical issues? If your answers are yes and no, then your check-up was going to do little except run blood tests. if you have stayed adherent, then your results would probably be similar to the last time they were checked. HIV meds don't just fail, so there's no reason to think that this routine check-up would be any different from last time.

here in America, our Ryan White program (which helps provide medications and healthcare for people living with HIV, especially those with limited or no resources for healthcare) requires 3-4 physician visits a year. Not for any medical reason (because when staying adherent without any other health issue, a person's health simply won't change very much in a 3-4 month time span); but because data has shown that 3-4 visits a year helps keep people (in general) mindful about their treatment and so they remain adherent to their meds. another reason to see a physician that often is to keep prescriptions for HIV meds current.

but to be a bit crass, in America where healthcare is big business, while multiple physician visits, lab work, and renewed prescriptions each year does ensure patients are well monitored for any health issues, it also means that everyone makes money too. Of course the cost of patients NOT staying in regular care and staying adherent can be astronomical in medical costs and lives. The cost of requiring regular visits then is money well spent.




Your words always bring me comfort. Thanks a million my friend for being always a source of positivity. After reading your lines, i am not worried at all. I am adherent, no health issues, and no signs of anything 'touch wood'.

Many thanks again
Prince
10
If you spend down the money, you probably wont lose medicaid.   This might be the time to get those dental implants, a used car etc.  Again talk to a case manager at an Aids Service Organization.
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