POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: hwy11poz on November 19, 2009, 08:23:13 pm
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OK, I received my positive results just over a month ago, and I have gotten started at the 1917 Clinic. Hopefully, my numbers will get better - I'm trying to be optimistic.
My main worries at present concern money. I have lost my job, and I was only working part-time so my unemployment is pitiful. I have a feeling the insurance company is going to try to screw me over on the COBRA (never used the insurance in the almost year I've had it). They are asking for more information about previous medical stuff - and haven't yet paid for anything.
My social worker and I made the call for ADAP assistance, since I had no drug coverage. Is that call all there is - seems way too simple. Also, anyone familiar with Alabama - are there any programs out there that can help me with other financial needs? I own my own house and a little land (family place and worried about losing it). And anyone with any experience dealing with credit card companies, any luck getting them to reduce payments? Sorry about all the questions - just what's on my mind right now.
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hi hwy11.
sorry to hear about your recent diagnosis, but welcome.
having only been diagnosed a few months ago, i don't have the answers to many of your questions, but am confident that you will find them here. the lesson and search tools are helpful. you'll also be hearing from other members who may know the ins & outs of the issues you raised.
regarding assistance, check out if you are eligible for ryan white benefits through you local department of health or administering aso. hopwa may also be of help regarding homestead short term assistance.
good luck to you with all, especially your numbers.
max
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My social worker and I made the call for ADAP assistance, since I had no drug coverage. Is that call all there is - seems way too simple.
I don't know about Ala. but I recently moved from OH to SC. I thought I was going to have to get the SC medicaid card before I could get any assistance to get my meds. Instead, I signed a few ADAP papers with my social worker, she made a call, then the pharmacy called me and set up the first delivery date. and viola! I had meds.
of course, I qualified for the help because I only get social security disability (which means I'm poor LOL), but I qualified for medical help in sc without even having a medical card. so yes, sometimes in some states under the right circumstances, it is that easy. ;)
Sorry I can't help you with the other money issues, I've been living on disability for 10 yrs so about all I can remember is poverty; but I have food and a roof over my house, so life ain't too bad. ;D
and don't worry about your numbers. when I started meds 16 yrs about I only had 7 tcells and about 800,000 viral load. Get on your meds, take them as directed, and I bet you'll be undetectable within just a month or two. (and you already have nearly double the tcells I have now, so don't sweat that either ;))
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max,
thanks for your welcome, and your suggestions. I've been reading on here for hours the last day or so; the amount of information here is amazing. I have found that there are several members on here from Alabama as well, so maybe I will hear from them soon.
As for my numbers, I'm a little anxious about the results from my 11/16 blood draws. My ID doctor said that if I was recently infected it could be that the numbers are still on their way to the "leveling off" point. I'm hoping that is the case; with nearly a year between tests, I just worry that I might have been infected longer rather than sooner ago, or that my test last year was taken during the period that the disease doesn't show (I'll learn all the fancy terminology the longer I'm here, I guess).
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Instead, I signed a few ADAP papers with my social worker, she made a call, then the pharmacy called me and set up the first delivery date. and viola! I had meds.
... so yes, sometimes in some states under the right circumstances, it is that easy. ;)
Glad to hear some things may be easy after all. Thanks also for the encouragement on the numbers - so far my optimism is winning out, but occasionally I worry.
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it's all new and scary at first and it takes some time to wrap your mind around; but just wait a while. ;) Next month, on the day after christmas will be the 17th anniversary of my diagnosis - and that was back when the only med available was AZT and nearly everyone died off within 18 months. Boy how things have changed! HIV is still a serious illness that you'll have to keep watch over in your life; but finding out is nothing like the death sentence that it used to be.
Have you started on any meds yet? Cause that'll be the deal to getting and keeping those numbers right. ;)
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Have you started on any meds yet? Cause that'll be the deal to getting and keeping those numbers right. ;)
I haven't started on any meds yet; my ID doc wants to wait until we see the next numbers. But he is leaning toward it; I talked to a research nurse about being part of a clininical study. I don't have the paper in front of me with the meds - but they are all approved meds. My understanding is they are just testing which combinations work better.
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If you had insurance at your previous job they cannot turn you down for COBRA but you should not allow too much time to go by without coverage.
The coverage will be whatever it was in your last job, meaning it may or may not be good insurance. So many people are underinsured, meaning they have insurance but it doesn't cover much. If that is the case ADAP should be able to step in. Also, depending on your income and possibly other criteria you might qualify for your state's Medicaid program.
If you go the COBRA route, there was a Federal program approved to help pay for COBRA for people who lost their jobs.
A good HIV/AIDS caseworker should be able to steer you in the right direction.
Have you checked out this place:
http://www.aidsalabama.org/
PS: I've never heard of anyone losing their house in a situation such as yours. As far as other assets above and beyond your home, I'm not sure how they count that as far as eligibility.
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If you had insurance at your previous job they cannot turn you down for COBRA ...
The coverage will be whatever it was in your last job, meaning it may or may not be good insurance. So many people are underinsured, meaning they have insurance but it doesn't cover much.
PS: I've never heard of anyone losing their house in a situation such as yours.
I have a feeling mine is the "not so good insurance". I have returned the COBRA form, but have yet to hear from the insurance company about paying the premium. I guess on the house issue, it's because there is 18 acres with it (grandparent's place), and I am worried about not being able to pay any big medical bills. I don't want to have to sell it (it would break my dad's heart) if insurance doesn't cover much.
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Also, I had my HIV testing done at AIDS Alabama. I'm not sure, but I was under the impression they only did rental assistance and helped with housing for the homeless.
My situation just seemed different from most I have read. My next goal is coming up with money for property tax before the end of the year.
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I don't want to have to sell it
I know the economy is bad right now; but hopefully, you're also busy looking for another job ;)
Even if you're feeling sickly right now, meds should perk you back up and you'll be back earning a paycheck in no time, to cover that house and land ;)
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I know the economy is bad right now; but hopefully, you're also busy looking for another job ;)
Sure am; I do job searching in the mornings, and spend the afternoons trying to do all the housework and yardwork that didn't get done when I was sick. It's amazing how quickly it piles up.
Just trying to make sure I cover myself financially. Lost another job last year and it tooking wiping out my savings and retirement accounts to make it through. Thought I would be able to get back on my feet fairly quickly, but it didn't turn out that way.
It's given me hope just being able to talk about it to someone. This site is great for that, and for all the knowledge and wisdom here.
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If you already have a social worker then he/she is probably already getting the ball rolling to get you coverage but you might want to check out the following link which has info. about HIV assistance in AL:
http://www.atdn.org/access/states/al/al.html
If you have had HIV since for less than 2 years, chances are your numbers will likely improve and you will have some leeway as far as when to start meds. There is a small minority of people who are fast progressors, though, so one can't take anything for granted.
You will be fine, there's excellent treatment available nowadays, just don't let the ball drop and check in with the social worker regularly to make sure things are going smoothly.
If your insurance from your previous job was as bad as you say than it's probably not worth keeping it. But there is one important reason to keep it and that would be to continue uninterrupted coverage, which is what would allow you to get insurance in your next job without any waiting period for "pre-existing" conditions.
If I were you I'd seriously look into whether or not you qualify for AL Medicaid (it's in the link above). If you do qualify it would be an ideal way to be covered and still have credit for uninterrupted coverage when the time comes that you get your next job.
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I haven't started on any meds yet; my ID doc wants to wait until we see the next numbers. But he is leaning toward it; I talked to a research nurse about being part of a clininical study. I don't have the paper in front of me with the meds - but they are all approved meds. My understanding is they are just testing which combinations work better.
Hi hwy, welcome to the forums.
I'd like to suggest that if you do decide to participate in a trial, that you try to get into one that looks at starting treatment within the first year of infection. The whole when-to-start subject is one that is very much a grey area and the more trial-based hard evidence we have, the better.
Here are some links to early-treatment trials that are currently recruiting:
Early Initiation of HAART (http://clinicaltrials.gov/show/NCT00491556?order=8)
Safety and Effectiveness of Short-Term Anti-HIV Drug Therapy for Recent HIV-1 Infection (http://clinicaltrials.gov/show/NCT00414518?order=11)
Observational Study of Treated and Untreated Acute and Early HIV-1 Infection (http://clinicaltrials.gov/show/NCT00219934?order=17)
Controlling Acute or Early HIV Infection With Antiretroviral Drugs, With or Without a Candidate Vaccine (http://clinicaltrials.gov/show/NCT00238459?order=27)
Early and Intermittent Antiretroviral Therapy in Naive HIV Infected Adults (TIPI) (http://clinicaltrials.gov/show/NCT00820118?order=29)
Strategic Timing of Antiretroviral Treatment (START) (http://clinicaltrials.gov/show/NCT00867048?order=24) (your CD4 would have to be over 500 to qualify for this one, but chances are good your numbers will improve in the coming months)
It's all just food for thought. We see so many here initiate treatment in the early days of infection, but rarely (if ever) are any of them doing so in conjunction with a trial. This means that anything we may learn from their experience can only be considered as "anecdotal" evidence. Being part of a trial means their experience will count for something in more concrete terms in the wider context.
Ann
PS - check out some of the informative links found here (http://www.aidsresearch.org/clinical_trials/joinatrial.html) so you can learn more about what participating in a clinical trial entails.
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Hi Hwy11 . Jeff here .
I'm in Birmingham Alabama and see the doctors at the 1917 clinic . They have a pretty good team there and will not let you go without meds if you need them .
You may want to contact Birmingham aids outreach for more info on what may be available to help you get though the tight spot you are in . Good luck and let me know how you are doing .
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You may want to contact Birmingham aids outreach for more info on what may be available to help you get though the tight spot you are in . Good luck and let me know how you are doing .
Hi Jeff - thanks for the tip on Birmingham AIDS Outreach. And on the 1917 Clinic, I have been impressed so far - they did a great job of making me feel at ease and I know the reputation of UAB's system, so I feel my care is in good hands.
Hi, Ann and Inchlingblue as well - and thanks for your suggestions as well. I'm guessing with the land and all that my resources may be too high for Medicaid, but I'll check with my social worker. The clinical trial's short name is Comparative Study of Three NNRTI Sparing ARV Regimens. They gave me a copy of the consent form to read through, and I'm to call the research nurse next week about possible interest.
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Hi, Ann and Inchlingblue as well - and thanks for your suggestions as well. I'm guessing with the land and all that my resources may be too high for Medicaid, but I'll check with my social worker. The clinical trial's short name is Comparative Study of Three NNRTI Sparing ARV Regimens. They gave me a copy of the consent form to read through, and I'm to call the research nurse next week about possible interest.
Of course every state is different as far as Medicaid eligibility but I know that in most cases they do allow people to own the house they live in and also to own their car. As far as other property above and beyond one's primary residence, I'm not sure. But it doesn't hurt to find out.
That clinical trial sounds like a good one. I personally wanted to avoid NNRTIs myself so I went on Isentress/Truvada. Not that all NNRTIs are bad or anything (and they are getting better) but for now I wanted to avoid them
You should find out which specific NNRTI-sparing combos they are.
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That clinical trial sounds like a good one. I personally wanted to avoid NNRTIs myself so I went on Isentress/Truvada. Not that all NNRTIs are bad or anything (and they are getting better) but for now I wanted to avoid them
You should find out which specific NNRTI-sparing combos they are.
These are the groups in the study - I think I was told it was raltegravir I couldn't take since it wasn't approved for someone who was HIV-naive.
Group 1 - emtricitabine/tenofovir disoproxil fumarate + atazanavir and ritonavir
Group 2 - emtricitabine/tenofovir disoproxil fumarate + raltegravir
Group 3 - emtricitabine/tenofovir disoproxil fumarate + darunanavir and ritonavir
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These are the groups in the study - I think I was told it was raltegravir I couldn't take since it wasn't approved for someone who was HIV-naive.
Group 1 - emtricitabine/tenofovir disoproxil fumarate + atazanavir and ritonavir
Group 2 - emtricitabine/tenofovir disoproxil fumarate + raltegravir
Group 3 - emtricitabine/tenofovir disoproxil fumarate + darunanavir and ritonavir
raltegravir is also called Isentress and it is approved for treatment naive.
Essentially as far as the drugs above the "emtricitabine/tenofovir disoproxil fumarate" is two drugs known as Truvada, so all three groups include Truvada.
Group 1: Truvada + Reyataz + Norvir
Group 2: Truvada + Isentress
Group 3: Truvada + Prezista + Norvir
All three groups are good but I personally would prefer Group 2, it's actually the drugs I am on and I am doing great. It's the only group from above that is twice a day dosing so maybe that's important to you and if you prefer once a day Groups 1 and 3 would be better.
If they said that raltegravir is not approved for treatment naive they are mistaken.
It's possible that they don't want to include any treatment naive people in Group 2 for other reasons but not because it's not approved for tn. I would ask them to clarify if I were you. Although I guess you don't get to pick the group you want anyway, or do you?
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raltegravir is also called Isentress and it is approved for treatment naive.
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If they said that raltegravir is not approved for treatment naive they are mistaken.
It's possible that they don't want to include any treatment naive people in Group 2 for other reasons but not because it's not approved for that group. I would ask them to clarify if I were you. Although I guess you don't get to pick the group you want anyway, or do you?
It's possible that I misunderstood the research nurse. There was so much info that day; perhaps she said that's the one the company wouldn't supply for free for the study. And you are right, the groups are randomly assigned. It's good to hear from someone on one of the combinations - I think when I talk with the research nurse and my clinic nurse, I will tell them I am interested in seeing if I qualify for the study.
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hi hwy.
yeah, i too went a little over a year between tests, so am unsure of exactly when during that time i got infected. i totally understand your apprehension about your next set of numbers...i feel the same way. my second labs aren't due for to be drawn another month. i've had so many vaccines in the preceding month (flu vacc, pneum vacc, h1n1 vacc, hep a vacc, hep b vacc) we thought we'd delay bloodwork until a few weeks after my last booster. that way my cd4 & vl will hopefully have stabilized somwehat. it's still nerve racking though...
i guess the bright side of it is that the second draw will give both of us a better idea where our respective trends are going so that we can competently address the meds issue. when at all possible, the recommendation is get a trend of at least 3 sets of labs.
take care.
max
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i've had so many vaccines in the preceding month (flu vacc, pneum vacc, h1n1 vacc, hep a vacc, hep b vacc) we thought we'd delay bloodwork until a few weeks after my last booster. that way my cd4 & vl will hopefully have stabilized somwehat. it's still nerve racking though...
i guess the bright side of it is that the second draw will give both of us a better idea where our respective trends are going so that we can competently address the meds issue. when at all possible, the recommendation is get a trend of at least 3 sets of labs.
I haven't had any of those vaccines yet - I was planning to ask about some of them when I go back to the clinic on Dec. 14. I am still so new to everything, I didn't really have any idea of what questions I wanted to ask when I was at my first visit. And yes, hopefully we will both see better numbers when we get our results.
I think this is God's way of letting me know I should have paid more attention in Science classes in school. ;)
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I think this is God's way of letting me know I should have paid more attention in Science classes in school. ;)
lol...you're funny. seriously speaking though, now's the time to learn. there's a lot of credible physiology info available online.
max
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seriously speaking though, now's the time to learn. there's a lot of credible physiology info available online.
I downloaded the Johns Hopkins HIV guide - interesting information, even though it is more for care providers. I haven't even begun to read everything here yet, and I know someone recommended The Body website. The small country school I went to years ago (32 in my graduating class) taught no science past general biology in those days. And that's been years ago now - but I welcome more suggestions as to good information.
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I downloaded the Johns Hopkins HIV guide - interesting information, even though it is more for care providers. I haven't even begun to read everything here yet, and I know someone recommended The Body website. The small country school I went to years ago (32 in my graduating class) taught no science past general biology in those days. And that's been years ago now - but I welcome more suggestions as to good information.
The JH HIV Guide has a Q&A forum in which Dr. Joel Gallant regularly answers questions. You can browse previous questions or ask him questions if you need to. It's an excellent resource. I've never actually downloaded an HIV Guide from their site, didn't realize one could.
LINK:
http://www.hopkins-aids.edu/q_a/index.html?categoryId=9352&siteId=7151
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I've never actually downloaded an HIV Guide from their site, didn't realize one could.
http://www.hopkins-hivguide.org/publications/main/2008_pocket_guide.pdf
It's the 2008-2009 version, and I found it helpful.
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I downloaded the Johns Hopkins HIV guide - interesting information, even though it is more for care providers. I haven't even begun to read everything here yet, and I know someone recommended The Body website. The small country school I went to years ago (32 in my graduating class) taught no science past general biology in those days. And that's been years ago now - but I welcome more suggestions as to good information.
Do look carefully at the dates on the material you read on the Body. It is a great site for getting a handle on what has been said over the years, but they tend to leave material up there long after it is out of date. So you need to read carefully.
And welcome to the forums
A
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Do look carefully at the dates on the material you read on the Body. It is a great site for getting a handle on what has been said over the years, but they tend to leave material up there long after it is out of date. So you need to read carefully.
And welcome to the forums
Thanks for the welcome, and for the heads-up on watching the dates. Even though the amount of information out there is overwhelming, I feel better prepared to ask some questions at my next clinic appt. At the first one, I really had no idea what to ask - I would appreciated anyone's suggestions on that as well.
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Thanks for the welcome, and for the heads-up on watching the dates. Even though the amount of information out there is overwhelming, I feel better prepared to ask some questions at my next clinic appt. At the first one, I really had no idea what to ask - I would appreciated anyone's suggestions on that as well.
There've been a few threads on that - the search box is your friend ;)
Here's one to start with: http://forums.poz.com/index.php?topic=21138.0
Good luck with the doc
A
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There've been a few threads on that - the search box is your friend ;)
Here's one to start with: http://forums.poz.com/index.php?topic=21138.0
Good luck with the doc
A
Thanks - for some reason I didn't even think of the search box.