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Author Topic: Here am I....  (Read 1269 times)

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Offline Nivek

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  • Posts: 11
Here am I....
« on: July 01, 2020, 06:43:06 pm »
Don't know where to start but to make it short.... I was applying for life insurance and of course got tested and then I got letter from life insurance with result and was upset when they declined me and then became speechless when I saw reason was hiv positive...That was on April 2nd and I freaked out and it was in middle of high case with coronavirus I waited then I realized something was wrong w me since I notice hair loss/thinning started around dec and then I realized overall body was losing hair as well I decided to go to doctor and of course did all blood works etc and got result which was aggressive syphilis! Plus Hiv! I don't know how long.... The doctor decide to get me start on Doxy and in awhile I notice improvement in hair loss and of course overall my body start to gain hairs again. I am still on Doxy as I'm writing this.... Then doctor said I can start on Hiv med and it's called biktarvy. Medicare part D doesn't cover it all :( I started that pill on June 12th.

I have question about ADAP... How often do I have to renew it? I'm in NYC.

I have all paper works done but am waiting for SSDI to send proof of income letter. I cannot log online to print it because of wrong password.

I have no idea what is my CD4 nor VL # is... I did ask my doctor several times but never got reply on that. I'll ask again soon when I finish my doxy pills and near to 30th days on biktarvy and will ask for test on cd4 and vl #.

How often do I need to get cd4 and vl bloodwork done? Any other bloodwork needed as well?

What vaccine should I get?
5/6/20- CD4 856  VL 10k
7/14/20- CD4 1,062 VL 91
May 2020: Started Biktarvy

Located in NYC

Offline Jim Allen

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Re: Here am I....
« Reply #1 on: July 02, 2020, 03:00:51 pm »
@Karoman

Your post was removed as it doesn't belong here.
Please do not post outside of your own thread again - Thank you.

https://forums.poz.com/index.php?topic=74395.new#new

Also if I catch you trolling people again to satisfy your own irrational fears it will lead to a ban! Leave other members alone.
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Nivek

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Re: Here am I....
« Reply #2 on: July 03, 2020, 02:21:05 am »
I missed what he said.... And I'm guessing my post must bored everyone, not even a welcome or answer my questions.
5/6/20- CD4 856  VL 10k
7/14/20- CD4 1,062 VL 91
May 2020: Started Biktarvy

Located in NYC

Offline Jim Allen

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Re: Here am I....
« Reply #3 on: July 03, 2020, 02:08:50 pm »
Nivek,

I apologize and will reply to you in full later tonight.

No excuse but I've been in hospital this week and without laptop so I've only been posting basic comments whereas your post needs more attention.

Karoman has irrational fears and was hijacking your thread, hence his reply was removed.

Jim
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline J.R.E.

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  • Posts: 7,786
  • Positive since 1985, joined forums 12/03
Re: Here am I....
« Reply #4 on: July 03, 2020, 11:14:41 pm »


I have question about ADAP... How often do I have to renew it? I'm in NYC.

I have all paper works done but am waiting for SSDI to send proof of income letter. I cannot log online to print it because of wrong password.

I have no idea what is my CD4 nor VL # is... I did ask my doctor several times but never got reply on that. I'll ask again soon when I finish my doxy pills and near to 30th days on biktarvy and will ask for test on cd4 and vl #.

How often do I need to get cd4 and vl bloodwork done? Any other bloodwork needed as well?

What vaccine should I get?



hi, ..

Please see this past post of mine regarding Ryan white/ADAP renewal / Re-authorization.

https://forums.poz.com/index.php?topic=74114.msg768195#msg768195

I believe you have to reauthorize ADAP, every 6 months.. That's how it is here in Florida, and I think its the same nationwide.

Are you getting a password reset letter from Social security ? You will need to have that proof of income for SSDI. Once you get the password reset letter, you can then print out the info from online. This happened to me one time, and I chose to have them mail me a temp, password. Took about a week. So call them check on the status of this. Be prepared to be on hold !!

Every time you renew, ( twice a year) log onto the Social security site, navigate to the document you need and print it out.

Every 6 months when you renew, you will have to have a copy of your labs.  CD-4 count and Viral load. no other labs are required to renew. You will give this info to your case worker. You will also need proof of residence. I show my drivers license, and some mail that comes to the house.

You will also need to show the last time ( Dates) you had an appointment with your Primary care/ and your Infectious disease care. ( At least I have to show that info)

If there is a way to get your medical info from online, it makes things a lot easier. If that service is available to you. So ask about that. It makes it a whole lot easier.

As far as labs being done.  Some people get them every 3 months depending on conditions. I receive my labs every 6 months, and then I have the follow up appt. , with the infectious disease doctor, shortly after getting those results.

Also, some of the documents that I show my case worker , might not have to be shown by you.


I am enrolled into the Ryan White/ ADAP program, because the VA healthcare system required me to be enrolled in it.

However, the only services i receive through them is the Dental service.  All  primary care, and infectious disease care I get through the VA Medical Center. I get my medications through the VA.

As far as vaccines , you should get a yearly Flu shot, and A Pneumonia shot, if you have not had one.  I also received a tetanus shot. The doctor may decide differently for you as you are on treatment for syphilis. So ask your Doctor about a Flu shot and Pneumonia shot.

It's important for you to get that income letter, so make that a priority !!

Once you are in the system it works very well !

I will repeat this again,...Every time I renew with ADAP, I show the last set of labs. They might have been done,  5 or six months previous to renewal. Make sure to keep your records !!

Be careful with that Social security password. It can be a bugger if you forget it.

Can you go to the doctor's office, and ask them at the desk to give you a copy of your lab reports CD4 and Viral load. Call the office.


Take care----Ray





« Last Edit: July 03, 2020, 11:19:56 pm by J.R.E. »
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

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  • Positive since 1985, joined forums 12/03
Re: Here am I....
« Reply #5 on: July 03, 2020, 11:21:05 pm »


By the way NIVEK,  Welcome to the site !!!


Ray  8)
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

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  • Posts: 7,786
  • Positive since 1985, joined forums 12/03
Re: Here am I....
« Reply #6 on: July 03, 2020, 11:39:04 pm »
AIDS Drug Assistance Program (ADAP) Formulary - July 2019

https://www.health.ny.gov/diseases/aids/general/resources/adap/formulary.htm

https://www.health.ny.gov/diseases/aids/general/resources/adap/formulary.htm#antiretroviral


Biktarvy is included in ADAP formulary, under "Multi-Class Antiretroviral Agent"


Ray
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

  • Member
  • Posts: 7,786
  • Positive since 1985, joined forums 12/03
Re: Here am I....
« Reply #7 on: July 03, 2020, 11:50:47 pm »

Hello Again,..

Here's some more info for you if you require it:

https://www.health.ny.gov/diseases/aids/general/resources/adap/

If you live in New York State; have no health insurance, or have health insurance but need help with the out-of-pocket costs (copays, deductibles, etc.); and your household income in 2019 is less than $62,450 for a single person, $84,550 for a couple, or $106,650 for a household of three; you may be eligible for help from the Uninsured Care Programs.   (The income limit increases by $22,100 for each additional household member over three in 2019.)
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline J.R.E.

  • Member
  • Posts: 7,786
  • Positive since 1985, joined forums 12/03
Re: Here am I....
« Reply #8 on: July 04, 2020, 12:04:43 am »
HIV Infection and Adult Vaccination

Some of these vaccinations are determined if your CD-4 is above or below 200


https://www.cdc.gov/vaccines/adults/rec-vac/health-conditions/hiv.html


Ray
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline Nivek

  • Member
  • Posts: 11
Re: Here am I....
« Reply #9 on: July 04, 2020, 04:34:04 pm »
Ahh gotcha- Hope things are ok with you since you have been in hospital.

Nivek,

I apologize and will reply to you in full later tonight.

No excuse but I've been in hospital this week and without laptop so I've only been posting basic comments whereas your post needs more attention.

Karoman has irrational fears and was hijacking your thread, hence his reply was removed.

Jim
5/6/20- CD4 856  VL 10k
7/14/20- CD4 1,062 VL 91
May 2020: Started Biktarvy

Located in NYC

Offline Nivek

  • Member
  • Posts: 11
Re: Here am I....
« Reply #10 on: July 04, 2020, 04:55:51 pm »
Ray-

Thank you Ray for take some time to reply my questions.

I honestly think itís stupid to reauthorize every 6 months, being positive will never turn to negative and we can be off the med. They should know better that once we are positive we will always be positive and no need to put us in this situation.

If u have to reauthorize every 6 months, and theyíre not FASTÖ how are we suppose to refill our arv by end of 6th month?

Yes I have tried to request temp password from SS office 3 times already and havenít gotten it.

I donít have case worker, I know there is GHMC here in nyc but Iím very shy around new people plus Iím deaf so itís making it even worst so I am doing everything myself to be sure Iím ok.

Iíll make note on the vaccine you recommend and talk to my new primary doctor.

I did ask my infectious for viral load, I think they never did it only did my cd4 cuz I see it on lab reports when I did multi blood works. That might be why she or front desk never answer that question always dodging around it and answer the other question.

Iíll ask again once I finish my syphillis med which is on Tuesday. I hope syphillis is gone for real! Iíll see whatís the next step is and ask for for bloodwork result on cd4 and VL and if they try to dodge it again Iíll ask why they havenít not answer that question and if they havenít done VL test then I want one asap.

I have one more week on Biktarvy then have to get another one as Iím still waiting for password to log in my SSI to print that simple sheet then try to get ADAP started up. I may call ADAP sometimes next week and ask few questions include if I have to reauthorization every 6 months.

5/6/20- CD4 856  VL 10k
7/14/20- CD4 1,062 VL 91
May 2020: Started Biktarvy

Located in NYC

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Here am I....
« Reply #11 on: July 05, 2020, 07:29:57 am »
I honestly think itís stupid to reauthorize every 6 months, being positive will never turn to negative and we can be off the med. They should know better that once we are positive we will always be positive and no need to put us in this situation.
don't bother fussing about this to anyone at RW. it's been this way a long time. Republicans are so afraid that someone somewhere is stealing tax-payer money (unlike all the money they just give away to corporations) that many things like SNAP, welfare, RW, and SSDI have frequent mandated checks to make sure one of us isn't the criminal that they have always believed we are.

Of course in the earliest days (90s and early 00s), frequent reauthorizations were being done because there was the very real possibility that the recipients might have died and not needed assistance anymore. These days it's just been doing as a burden to you and your local HIV clinic staff to ensure that none of us are somehow "stealing" resources that the federal government is providing

Quote
If u have to reauthorize every 6 months, and theyíre not FASTÖ how are we suppose to refill our arv by end of 6th month?
You'll normally get the paper work in plenty of time (sometimes up to two months before the due date), so you have to make sure that you don;t procrastinate and do get that paperwork back ASAP so that even the slowest or most overwhelmed office has time to process your reauth application.

Unfortunately, you're going to have to just suck it up and do the paperwork every 6 months like all Ryan White (and other government benefits) recipients have been doing for decades. Sorry. So be on the lookout every 6 months because, in the long run, providing some paperwork and filling out some paperwork is a very small price to pay to get 10s of thousands of dollars worth of meds every year - especially when not having those meds means you will die of Advanced HIV ie AIDS ;)



Hey, Ray! I hope you can keep reauthorizing via the net from now on. At the clinics that me and the hubby have used in both North and South Carolina over the last decade, we've been able to do it that way for the most part. We send our RW rep all the docs, and they have sent us the completed form that we have to sign and mail back (sadly no faxes or copy signatures allowed). Beside having a few phone calls, we haven't actually seen our RW administrator in 3 or 4 years now.
leatherman (aka mIkIE)

Offline J.R.E.

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  • Positive since 1985, joined forums 12/03
Re: Here am I....
« Reply #12 on: July 05, 2020, 07:50:04 am »


 Beside having a few phone calls, we haven't actually seen our RW administrator in 3 or 4 years now.

 8)  I should have looked into that a few years ago. I never knew it was possible to renew on line until this past April when I called down there.

I remember saying to the case worker, that I wasn't comfortable to be sitting in a waiting room with Covid around.  That's when she suggested I renew on line !  So it worked out great !

Stay well----Ray  8)
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline Nivek

  • Member
  • Posts: 11
Re: Here am I....
« Reply #13 on: July 12, 2020, 02:32:57 am »
That's great u were able to do it online, wonder if i'm able to renew online? I was able to fax the paperworks to ADAP. It would be nice if they had portal where u can keep track on everything. I'm very OCD and always want paperwork in folder to keep track on everything.


8)  I should have looked into that a few years ago. I never knew it was possible to renew on line until this past April when I called down there.

I remember saying to the case worker, that I wasn't comfortable to be sitting in a waiting room with Covid around.  That's when she suggested I renew on line !  So it worked out great !

Stay well----Ray  8)
5/6/20- CD4 856  VL 10k
7/14/20- CD4 1,062 VL 91
May 2020: Started Biktarvy

Located in NYC

Offline J.R.E.

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  • Posts: 7,786
  • Positive since 1985, joined forums 12/03
Re: Here am I....
« Reply #14 on: July 12, 2020, 01:59:59 pm »
I'm very OCD and always want paperwork in folder to keep track on everything.

 :) I know exactly what you mean. I am the same way !!  :) Throughout the years, I have been able to scan a lot of my medical documents, etc,... and get them all on flash drive. Of course, with my suspicions of drives failing, I have two flash drives for these files,  in case one fails. OCD !   ;D  I have back-ups of my backups.  :)


Ray
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

 


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