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Author Topic: How we gonna pay?  (Read 4955 times)

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Offline B99

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  • Posts: 33
How we gonna pay?
« on: June 28, 2006, 11:55:55 AM »
Firstly, thank all of you for your kind words on my first post.  I am feeling way better at this point in time and it is largely due to your kind words and encouragement.
Now, to the business at hand.  I am in the initial process of planning a move the NYC from Minnesota in summer 2007.  Before my diagnosis I was scared because my career is in the arts/journalism and I knew that it was going to be a huge event moving there and  struggle for the next X years while I got myself established.
Then the bombshell that I have HIV and may need to start treatment in the next year or so.
Before the news, I was planning on drifting a little bit.  It was not a priority for me, say, to have a job or make sure my insurance was taken care of.  When I graduated from school I had no insurance for 2 1/2 years, which was one of the reasons why I didn't get tested when I exhibited symptoms of what I now know was acute HIV infection.  Now with the extra burden of the disease, being able to get adequate medical care has become my main issue.
From my research, HIV medications are EXPENSIVE.  So I just wanted to get a sense about what other people have done to deal with the cost (both those with insurance and those with out)?  Do most people's insurance cover the cost of the drugs?  And for those without insurance, how have you been able to afford them?  AND if there is any living/or has lived in New York City with this disease, how is it?

Offline Cliff

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Re: How we gonna pay?
« Reply #1 on: June 28, 2006, 05:53:14 PM »

This website talks about the various state funded insurance options for the state of NYC.  If you move to NYC and you don't have health insurance, you will need to apply for the state's ADAP program in order to obtain HIV treatment (and access to meds, paid for by the government). 

I don't know how much you make, but you may qualify for Medicaid (but your income needs to be pretty low if you're working and single). 

You need to think about health insurance, cause the days of not worrying about it are long gone.  You now have a disease that will require expensive medical treatment.  While you should not make decisions about employement and moving, solely based on insurance (and access to health care) but those issues should be very high on your list. 

While ADAP, the most likely way for you get access to HIV treatment and meds, will cover your HIV (and HIV related) treatment, it is not comprehensive insurance....so don't only rely on ADAP and think you are okay.  For example, you could break your leg and the cost of that treatment is not covered by ADAP.
« Last Edit: June 28, 2006, 06:00:25 PM by Cliff »

Offline Eldon

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Re: How we gonna pay?
« Reply #2 on: June 28, 2006, 06:06:02 PM »
Cliff beat me to it. When you get to NYC, go to the Health Department and get assigned to a case manager for your case. Tell them that you are interested in Ryan White and being enrolled into ADAP.

ADAP covers your HIV medication costs. Ryan White covers your medical, dental and your vision.

Meanwhile, I would suggest you make an appointment with your doctor first to start treatment for your HIV. You can start at your county's health department.

If you have insurance it will pay for certain meds but that depends on your provider. And there is a possible co-pay involved.

Offline B99

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  • Posts: 33
Re: How we gonna pay?
« Reply #3 on: June 28, 2006, 06:41:50 PM »
To be honest, that is my biggest fear of all: having to rely on a government program to keep me alive.  Out of the many thoughts that filled my head within the 24 hours after my diagnosis, that is the one that keeps coming up.  I am just starting my career and, while before this thing came up, my business plan included a few years of necessary "dangerous" living (Ramon noodles, no healthcare, limited spending) that define a career in its infant stages, now I feel like I have to go for a job that is completely "safe," because I need healthcare coverage.
With this ADAP aren't there thousands of people on the waiting list for drug treatment?  And isn't the program up for yearly review?  And isn't New York experiencing a budget cut for its AIDS assistance?
My health is not completely my own anymore.  Access to things that can save/lengthen my life are now in the hands of bureaucrats and drug companies.  Sigh.   :(

Offline Cliff

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Re: How we gonna pay?
« Reply #4 on: June 28, 2006, 07:21:13 PM »
Everyone's health is in the hands of someone else, whether it's a government, a private health insurance company, an employer, etc.. we are all dependent on the decision-making process of others.

But I do understand your dilemma.  Though, there's no rush to make any decisions.  Your numbers were okay, so it's unlikely you will need to be on medication ASAP.  So you will have time to decide what to do.  BUT until you do decide, you should sign up for ADAP in the state you currently reside in (along with your local ASO).

Good luck to you!

- Cliff

Offline bear60

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Re: How we gonna pay?
« Reply #5 on: June 28, 2006, 07:28:19 PM »
I have found that:
The IRONY is : if you have no insurance you will find it easier to get the meds thru a free clinic and with help from the state...in PA at least.
But by all means....go to your local ASO....in New York and discuss the situation with a counselor.  New York....isnt the big one GMHC or something like that?
« Last Edit: June 29, 2006, 05:31:22 PM by bear60 »
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Offline sdcabincrew74

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Re: How we gonna pay?
« Reply #6 on: June 28, 2006, 08:30:48 PM »
Personally, I am not a fan of "public" government insurance and have done my best to avoid it.  I have private insurance through my hubby and my meds cost me about 400 dollars per year.  Doctor visits are 10 bucks and specialist cost nothing if my doc refers me.  Plus, my Primary Care doc is an HIV specialist.  Last year I spent three weeks in the hospital with PCP and stuff.  Total bill was about 123,000 dollars, but I did have an ocean-view room.  Anywho, my total out of pocket was something like 50 bucks.  Anyway, try and keep you private insurance and when looking for jobs, make the benefits, not the salary the primary concern!
The difference between an overnight and a layover is luck!

Offline Joe K

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Re: How we gonna pay?
« Reply #7 on: June 28, 2006, 08:41:29 PM »
Hey B99,

Just to clarify a few points.  The ADAP (AIDS drug assistance program) only covers the cost of your HIV related medications and provides no medical or other care.  Ryan White Services are the payor of last resort and depending upon your state, could over a wide range of services and drugs.

What I would suggest is that you contact an ASO in New York before you move and lay out all your needs and your income.  If you plan ahead there shoudl be no reason that you can't just show up, enroll in the programs and off you go.  A case manager is best because they know the programs, eligibilty requirements and who to see for what.  Remember to be nice and courteous as you want something from these people.

They should be able to steer you to all the resources you need and tell you the best ways to acquire them.

Offline Dachshund

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Re: How we gonna pay?
« Reply #8 on: June 28, 2006, 11:40:48 PM »


Just a little bit of advice....you are dealing with a bureaucracy so come prepared. I suggest you prepare a folder with all pertinent info, W-2, pay stub, proof of address, etc. It can be stressful and you don't want to have to reschedule because you forgot something they need. Get a list of the documentation required and have it ready. Be patient my friend it gets easier...especially when you are prepared.

Good luck and welcome.

Offline jordan

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  • What I want is a celebration
Re: How we gonna pay?
« Reply #9 on: June 29, 2006, 08:23:36 PM »
Luckily I have insurance which covers the cost of my medication.  I asked the pharmacy what the cost is for Sustiva without insurance and they told me $566 USD for 1 month supply (i.e., 30 pills).

I didn't even want to ask what the Truvada costs.  ::)

« Last Edit: June 29, 2006, 08:45:20 PM by jordan »
If you think your lonely now, wait until tonight.

Offline Bartro

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Re: How we gonna pay?
« Reply #10 on: June 29, 2006, 08:46:17 PM »
Truvada = $773.83

My insurance pays all but $50.  ADAP pays the $50.

Offline Life

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  • Member 2005
Re: How we gonna pay?
« Reply #11 on: June 29, 2006, 09:36:58 PM »
B99...  I happen to have excellent health care benefits, but I am not using any of it for now.  I decided to go on a study which pays for everything,  I mean everything for the next 2 to 3 years.  There are many studies out there that are NO RISK studies such as mine listed below.   Then there are others that are not recommended.   You might look into it...  I feel I have super close monitoring (every six weeks) and I am learning allot being this close to my doctor who also manages the study.   You have to be very choosy however and know what your getting yourself into.  I did allot of research before signing over my Guinea pig rights...  In fact I get a fat $25.00 check everytime a visit which buys me and William Lunch each visit.   Id much rather have them keep the check and keep taking the great care I receive each and everytime I see them.   Including all the hugs I get from the staff and Doctor.....

« Last Edit: June 29, 2006, 09:43:16 PM by Eric »

Offline randym431

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  • Posts: 1,131
Re: How we gonna pay?
« Reply #12 on: June 30, 2006, 05:22:26 AM »
This is a good question. Now on meds and doing great, I don’t worry or even think about hiv much. Just take my two pills daily. Other posts have been started on fears and such being hiv. I don’t really have those, but I do fear my meds not being covered at some point. Problem is here in the good old USA, insurance is tied to employment. If you have a fairly good job, you probably have good insurance. Once the job ends (if it does), then so does the insurance. And from what I have seen, getting on disability can be a hard long battle. You basically have to be as poor as a church mouse to get assistance. And hiv and work seem to go together like water and oil. You never know when your health or the meds will stop you from keeping down a job, and there goes the healthcare insurance. Pretty lousy system if you ask me.
And then again, med coverage is at the mercy of your health care provider. Many companies change health care providers ever year, to save a buck. So will they continue to cover drugs and meds??? Its a big unknown.
Thats my fear with hiv, or any illness for that matter where you depend on very costly pills to live.
It doesn’t seem right in having to go from employed with a good living, a home and car to having nothing in order to qualify for government help. Thats my fear with having hiv.
« Last Edit: June 30, 2006, 05:24:48 AM by randym431 »


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