POZ Community Forums
Main Forums => Living With HIV => Topic started by: tnboy on July 28, 2007, 02:18:16 pm
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Let me first say,it is not my intentions to offend ANYONE with this post so I hope it will be received in the manner it is intended. I have been a member of aidsmeds for a little over 3 years now and use to post on a very regular bases but not so much in the last year because I just do not feel up to it.
For some of you,what I say may be a repeat but there are many new members here since I posted more frequently so let me share briefly a little of my history.
I was diagnosed HIV+ In May of 2002 with a cd4 count of 136 and a VL of 750,000+. I was immediately started on treatment at that time. In the begining I had to change meds very often because of serious side effects until my doctor finally got me on a combo that I could deal with,being Viracept, Viread, Epivir, Zerit, and Septra DS. I stayed on this combo for over 3 years non stop. I still had significant side effects but I stayed with it but finally got to the point I had to stop working and filed for SSD. For those that have had to file for SSD you know that can take a while. It took me two years but I had purchased a long term disability plan from my employer so that kept me going while I waited to be approved for SSD.
Almost 2 years ago I was granted SSD and was put on Medicare as my medical insurance. While I was drawing my income from my insurance I qualified for assistance for my meds and they did not cost me anything. When I went on SSD and Medicare that changed even tho I draw much less from SSD than I did from my insurance. I did purchase a Part D plan for medications but my copay for them cost me in excess $400.00 a month until I reach my gap and then it is all up to me for a while.
There is no way I can afford these cost and cover living exspenses so for the last several months I have not been on any significant treatment other than just a few meds some have had on hand and shared with me. As I have shared in the months passed, I have been seeking EVERY possible means for assistance and do not qualify for ANY of the programs. My HIV doctor has even had his staff working on what they can come up with and ,so far, nothing. Some of you here have offered suggestions and I can assure you they have all been checked into but I just get told I do not meet their guidelines.
I have written letters, made phone calls and anything anyone has suggested that I try but come up with nothing.I am from the state of TN ,by the way, and I even spoke with the secretary of the TN house of reps and she told me that she would admit that TN has very little to offer. She told me that if I had not had my LTD insurance when I was seeking SSD I would have been put on SSI benifits and Tenncare or medicade and even tho the govenor of TN has cut out most Tenncare anyone HIV+ cannot have their benifits taken from them, Since I have never gotten SSI benefits, I do not qualify for any of the drug assistance programs. In a sence, I feel I am being punished for purchaseing a LTD plan. I could go on and on but I know you get the picture.
I said all that to simply say this. I do not participate in the forums so much these days but I do come here to seek helpful information and read some of your post. I know there are others of you that are dealing with your own struggles and tho they may be different from mine, they are still very important to you and you appreciate" HELPFUL" advice. For the most part, I feel that is what is given but I have noticed that some of you tend to come across that you do not think some of us are telling the truth or we could do better if we would only try, which may be the truth sometimes but not everytime.
In my Most sincere southern manner, I would like to suggest that we all be a little more sensitive to the needs of others and not assume anything. I admire and "yes" even eny those of you that seem to be living with HIV and it has not made any significant changes to your life or you live in an area where you have more programs available to you,better case workers, and so on.
Simply put,if things are going well for you and you are getting the assistance you need "Count Your Blessings" We all know everything can be going our way today but tomorrow it could all change and you might could use some sincere understanding and support from others. We have all heard it said " Never judge a man until you have walked a mile in his shoes". If out of a 100 HIV+ people, 99 live a normal life would you want to volunteer to be the ONE who does not? None of us would.
Thanks for letting me vent and I do wish the very best for us All, whatever our struggles may be or yet to come.
Most Sincerely,
Mike :-*
05-23-02 CD4-136,8% VL-750000
05-31-02 CD4-170,10% VL-631826
08-30-02 CD4-180,12% VL-1866
02-14-03 CD4-192-12% VL-806
06-03-03 CD4-253-11% VL-400
10-17-03 CD4-294-14% VL-4247
02-03-04 CD4-194-14% VL-7880
06-10-04 CD4-178-14% VL-424000
09-02-04 CD4-182-9% VL-750000
02-03-05 CD4-77-12% VL-141000
10-13-05 CD4-114-10% VL-170000
03-17-06 CD4-114-8% VL-230617
10-03-06 CD4-51-5% VL-204069
03-30-07 CD4-23-2% VL-141431
04-27-07 CD4-15-1% VL-338235
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Mike, you need not apologize for your thoughts, feelings and reality. I lived the nightmare of losing my TennCare coverage and I know on a very personal level the devastation it can and has caused to many people...your story is one of thousands in the state of Tennessee.
This thing about being told to count your blessings has always bothered me...I don't have health insurance...count your blessings you could live in Africa...my neuropathy makes working long hours painful...count your blessings at least you have a job...depression consumes me sometimes...count your blessings you could be suicidal...you get my point. For every problem I face there is always going to be someone worse off (you, case in point) and for every problem you encounter I suppose there is someone worse off the you. Yes, I admit that, but it doesn't make my problems, or your problems, or their problems seem any less problematic by trotting out that old answer to everthing, "count your fucking blessings." In fact I think telling someone to count their blessings while they continue to suffer is just a polite way to say shut the fuck up.
Mike, I wish I knew what to tell you but my heart has been so heavy this past two months with death and dying that I really would be of little use to you. 'bout all I can do is count my blessings.
I hope you catch a break.
Hal
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Mike-
Your story breaks my heart. What has happened in TN could happen anywhere until we can muster the political will to insist, as a country, on universal standards of health care for every American citizen. Anyone carping about delays or "rationing" in the Canadian plan should think twice after reading your post.
Your point of view, though hardly comforting to those unfamiliar with the Draconian restrictions imposed on income, needs to be heard. Please consider adding your voice again around here. It's desperately needed.
Brent
(Who gets it)
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Mike, my heart goes out to you. I know well the bureaucratic snafus with these programs though I was living in New York at the time so I can't even compare my situation, which seemed dire at the time, to what you are encountering. Horrific is the only description. It amazes me that more can't be done on a federal level to mandate certain things state-wide, but we all know full well what forces fight against this. It just amazes (disgusts actually) me that there is such disparity within the same country.
You're very correct about the few individuals who insist on these very forums that some people need to buck up and pull them selves up by their shoelaces... sometimes it's not possible.
One thing, however, that I'm curious about: I thought that if you had a private long term disability policy that even once your SSD went through you still collected from that private policy in addition to your SSD. Maybe that's the case for you and the amounts are still not enough... just made me wonder that's all.
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Mike,
Contact the TN Deptarment of Human Services & make an appointment with a case worker there. You can apply for SMB or QMB depending on how much you draw form SSDI. This will cover the cost of your monthly Medicare premium & will pay the co-pay on your prescriptions & any copays you have to pay when you see another Dr.
Talk with the new lady that handles the Ryan White "stuff" the next time your in Jackson @ the Dr. She can tell you more about it.
My income was too high for SMB but I did qualify for QMB it's worth checking into.
Good Luck,
Dan
:-*
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Mike,
I really needed to read your post. I want to tell the people who tell me to count my blessings that they can take a long flying fucking leap!
It angers me and, like Philly, disgusts me that this nation, with all its wealth, can't provide one of the basic necessities to its citizens. I really hope you can get some kind of help, somewhere. Please come back!!
Betty
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Count your blessings;
Wait a day or a week and things will look better;
Consider those less fortunate;
Stop dwelling in unhappiness;
If you are really miserable then you should volunteer!
Don't be so doom and gloom;
There's always hope
What has always bothered me about the above statements is highlighted by your life, Mike. Such statements usually ignore (and sometimes are counter to) the reality of the situation of the person to whom they are responding.
Though I think it is important to remind ourselves of the context of our concerns in the overall picture of what life is all about - I think those "context reminders" have now become so overused and without meaning that they are now in the category of simple pop culture pat answers that are usually given by others without thought to the actual context of the situation. (Did I just confuse everyone enough with that one?)
Things don't always get better, and no, sometimes helping others is not the solution to helping ourselves, nor is just finding happiness or hope as if they are lost keys left under the couch. Sometimes the only way to survive is to face the reality that sometimes shit stinks and dealing with it.
This is not to say that I don't recognize that there is an equal risk of someone being so lost in the bad that they are unable to try to find a solution to their problems, nor do I think that life will works solely on pessimistic view points - but damn it if I believe that the best way to help another (let alone ourselves) is to assume that the way to get through real issues is to just have or get a positive outlook.
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Thanks Guys So much for your comments of concern and support. I honestly appreciate it more than you know. It just helps me to know I am not alone in this fight when I hear from others.
Hal, Buddy I could not agree with you more, I hate that phrase as well, but unfortunately, it is what we hear most when people do not know what else to say. Kinda like when someone ask "How are you doing". We know they are just being polite and so we, in our own polite way, say "Fine how are you". I know there are exceptions but for the most part that is just the way it is.
Brent, That is exactly what my intentions for this post were, no matter where we are from ,things are always subject to change and any one of us could find ourselves having a need we did not plan on. In my opinion, the US tries to paint the picture that aids is no longer a problem here, we have the meds available, just take them and live a normal life.
I know I am not the only person in the US faced with this situation and the country needs to own up to the fact that, yes, HIV/Aids has come a long way over the past years but we DO still have people in our own country that do not have the means for proper treatment, and yes, people do still die from aids in the United States. Granted the percent is far less than years past but it still is a problem here.
Philly, I do not know about all LTD plans but the one I had was through my last employer and they only pay until you return to work or you are granted SSD. As many of you know, once you are granted SSD you are paid back pay from the date you filed. In my case, I had to repay every penny I had drawn from my LTD plan once I received my first check even tho premiums were deducted from my check each week. This plan should be called a LTD loan because that is actually what it is.
Dan, Good to hear from you again, I thought I had been marked off your list forever. lol
Thanks for the info but I have already tried All those things, more than once actually, and was told I do not meet the guidelines. I have met with the new lady at the clinic and she says there is nothing they can do. I do not qualify for any Ryan White programs.
Betty, I hear you loud and clear, it sucks,don't it. ALL healthcare in the US needs a major overhaul!
I have received several emails being passed around by individuals asking the people of the US to ban together and demand all politicians have to be put on Social Security and Medicare so they see what it is like.
Again, Thanks to all of you for giving of your time to read about my situation and offering your words of encouragement and support. If they was any particular thing that I knew any one of you could do I would ask and I feel certain it would be done but you are doing all that can be done just by listening and sending me any suggestions that I may not have thought of.
Thanks a Million,
Mike
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Hey Mike:
That's one of the reasons we're hear-to listen, especially when someone is having problems. Anytime-
Betty
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Mikey-boi,
It's a shame you don't post more often because you so often say that which needs to be said. I hope those here who think that every problem can be resolved with a desk-calender platitude pay close attention to this thread.
Love,
MtD
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Mike, have you double checked on the lady's information about not qualifying for any Ryan White? Sometimes one person will say one thing and the next one another. It's very frustrating, but I speak from experience with these folks.
Also helps to locate the rules information yourself on some document to double check them yourselves. You should be able to find out what the income qualifications are in TN -- from what I can see it's 300% of the federal poverty level as of 6/06.
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Hey Mikey,
I read your post in its entirety but did not read any replies so if I'm repeating anything I'm sorry for wasting your time.
I'm not from TN (thank God) but lovely country I have family that use to live there.
dude all I can say is maybe its time to move to another state that has better assistance for people like us.
For one NJ has some great assistance programs and I'm sure NY and CA must have some programs that may help you.
That's about all I can say or know. I hope things work out for you man
take care,
Bob
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Hi Mike
Will e-mail you soon but in the mean time please know you are in my thoughts.
((((Hugs))))
Jan :-*
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Mike.
All of us, I think, respond differently to different people. That's really no different from all of us just trying to live our own lives as we see fit and not worry what others think. Yet the virus drags us down and makes us weak and vulnerable and what others do think and say does matter. Many people don't know this. You do. Thank you for reminding us.
robert
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Hi Mike
I am sad and angry. Others said it so I won't repeat.
I noticed your last count is from April, have you not seen a doc since?
I hope so much your numbers have improved since then.
Are you on any meds now (from donations)? If so which ones?
Have you considered going to the local media to apply pressure on the authorities involved? Without name/pic of course.
Is there anywhere else you could go to get treatment?
Keeping my fingers crossed for you,
Thank you for posting.
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Since I have never gotten SSI benefits, I do not qualify for any of the drug assistance programs. In a sence, I feel I am being punished for purchaseing a LTD plan.
I missed reading that sentence or it just didn't sink in until now. It still doesn't make things right though. How many more of us are out there around the U.S. that fall through the cracks in our so called great healthcare system?
There has to be someway we can come up with the meds Mike needs... any suggestions?
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Tnboy have you called "Nashville Cares" and asked about Emergency Medical Assistance?
Google them, maybe this has already been asked/answered.
Good Luck,
Kent
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Has anyone heard from or knows anything about Mike now? I PMd him over a month ago but haven't heard back.