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Author Topic: newly positive, how fast to get care?  (Read 3013 times)

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Offline plant_sausage

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  • Posts: 3
newly positive, how fast to get care?
« on: February 09, 2022, 09:49:51 am »
Bloodwork came back reactive from a routine physical this weekend (I found out because the lab released the results to me before my Dr. even saw them; I was sitting on the toilet checking my email and... yeah.)

Follow-up CD4 (460 and 35%) and VL (~100k) just came back this morning and sounds like this is not a drill. Haven't really had a chance to emotionally process things yet; right now comfort comes from trying to understand it all and to do whatever I can to feel at least slightly in control.

Along those lines, my insurance (US) lists two ID clinics in my area that are in-network. The one my doctor referred me to set me up with an initial appointment seven weeks from now. I think that sucks. But my opinions aside, is this typical and "OK" to defer starting ART that long, or should I try to get in at the other clinic, or even consider paying cash to go out of network so I can just get started?

Just trying to find the line between advocating for myself and being unreasonable.

Offline Matths

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Re: newly positive, how fast to get care?
« Reply #1 on: February 09, 2022, 10:18:58 am »
Hi there, just a brief response because there will be others giving you more detailed advice. Personally, I would not wait 7 weeks for an appointment. Especially not for a first appointment. I would select the ID doctor that you feel most comfortable with, set up an appointment asap and start treatment immediately. There are many reasons to start asap and I believe that in terms of viral load and consequences of untreated HIV infection, every day counts. Best Matt

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: newly positive, how fast to get care?
« Reply #2 on: February 09, 2022, 11:53:24 am »
you should check with your state's health dpt (website or phone) for a Ryan White clinic in your area. The federal Ryan White program provides funding for many HIV+ clients and to most clinics that treat HIV. Clinics that accept Ryan White funding have access (funding and prescribing physicians) to provide care quickly to newly diagnosed patients. You should be able to get care at one of these clinics and then stay on or switch to an in-network physician to continue your care.

Waiting two months does seem like too much to me too. As a patient/consumer advocate who has worked with both the North and South Carolina Ryan White programs, one of the measures that they track to evaluate HIV care providers' performances is the time from diagnosis to prescriptions. The goal is to make that time as short as possible.....and 7 weeks is tbh unnecessarily too long.

you didn't mention your state or I'd link to the health dpt there; but just search for "HIV" or "Ryan White" at your state's health dpt website and you should find some contact information for the Ryan White program or a local HIV/Ryan White provider/clinic.

Hope that helps!
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline plant_sausage

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  • Posts: 3
Re: newly positive, how fast to get care?
« Reply #3 on: February 09, 2022, 01:50:38 pm »
Thanks, Matt and leatherman. I will definitely work on seeing if I can get into the other clinic sooner (it's a university-based hospital so I thought they might be slower; we'll see.)

I actually live in North Carolina, leatherman. I found this page from the state, but there must be 100 links on that page and it's difficult to parse what is relevant to me. I am over the 300% of federal-poverty income limit, so my understanding is that Ryan White is not for me?


Offline lightalltheway

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  • Posts: 159
Re: newly positive, how fast to get care?
« Reply #4 on: February 09, 2022, 02:33:21 pm »
Hello,

First, i am sorry for your recent diagnose. It is a lot to take in now, but the choice is yours. I feel its a free invitation to a healthier life style and wiser choices, at least for me.

Unfortunately, i am not familiar with the American health care system but rather the English one. My coin about this time frame is a lot to wait for.

Please keep us posted and always remember you are not alone.

Prince

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: newly positive, how fast to get care?
« Reply #5 on: February 09, 2022, 07:06:32 pm »
I am over the 300% of federal-poverty income limit, so my understanding is that Ryan White is not for me?
that's right......however, the object of RW associated providers is to stop HIV and that means getting people treated (when you've been undetectable for at least 6 months, you can no longer transmit HIV, thus reducing the spread of the virus).

I would bet the University based clinic is part of the Ryan White program. If you explain to them your situation of not being able to get an appt. with the other physician for 2 months, they *should* be able to help you.

While I'm down here in the CLT area, I have connections with the state Ryan White Program. After you contact the University, if they can't help you and you need some more help, PM me with the area of the state you live in and I'll see who I can reach out to for some help.  ;)
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline leatherman

  • Member
  • Posts: 8,101
  • Google and HIV meds are Your Friends
Re: newly positive, how fast to get care?
« Reply #6 on: February 09, 2022, 07:14:11 pm »
Unfortunately, i am not familiar with the American health care system
count your blessings. LOL

maybe one day we'll wise up and get a national health care program....instead of handing over bazillions of dollars to insurance and pharmaceutical companies
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tguid13

  • Member
  • Posts: 22
Re: newly positive, how fast to get care?
« Reply #7 on: February 10, 2022, 09:14:01 pm »
I would definitely get started sooner than 7 weeks. Personally, I didn't start processing until I was UD. Then it started to feel way better and at this point only 3 months in, it is something I think about too, too much. There are hard days and good days.

My recommendation is the following: Go to one of those free public health clinics if available in your area and get an STI panel or talk to them about your recent diagnosis. They will get you set up with at least 1 month of meds (mine was 3) and a case worker who will help you navigate insurance and providers. This team is crucial in my opinion to being newly diagnosed. In my experience, these were some of the best people that I've met in my life. Once your case worker gets you signed up for ADAP, Ryan White, etc. (all free services that assist people living with HIV), then you have at least a month - maybe 3 to find a provider that works best for you.

If you have a Vivent Health in your area, they are amazing.

Offline plant_sausage

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  • Posts: 3
Re: newly positive, how fast to get care?
« Reply #8 on: February 25, 2022, 10:47:57 pm »
I got in touch with a bridge counselor at the county health department, and they were helpful chasing down the right folks at the university's ID clinic to process my referral. And now, I have my first appointment early next week! Hooray!

The diagnosis is still a little unreal feeling; I really look forward to starting meds, just so I can feel like I can do something proactive.

Offline Matths

  • Member
  • Posts: 91
Re: newly positive, how fast to get care?
« Reply #9 on: February 26, 2022, 05:55:27 am »
Very good news. Best of luck with the appointment. I am glad for you that you were able to manage this so efficiently, best Matt

 


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