Under alot of Stress

[Jerry71]

This week has been very stressful for me. I have found myself falling deeper into depression. I have thoughts of just quiting my meds. I just really don't care anymore. I try to explain my situation with my parents but they don't get the concept of HIV. Recently had my blood work done only got my viral load count done only. Me and the nurse had it out over the phone about this she says that having a undectable VL is ok and there were no need for me to worry about my CD4 count this time around. She also said my doctor was the one that made the decisions of getting my blood work done.

Also with me now having Medicare it has something to do with how much Medicare is willing to pay for each visit and blood work I can get. This is all just a fucked up mess. Come to find out that when I was getting my meds through the health department they requested that I get all my labs done and too I was on Ryan White. Things have changed now that Medicare has taken over. I am just pissed off with how the system works.

I am just going to take some time away from the fourms so I wil not be on as I have in the past. Just have to get some things in order. I just can't stand myself at the present. I hate this fucking virus I wish sometimes I were dead. I wish that when I had my CD4 count when it was down to one that they would have just let me die. Instead that brought me back so I can live with this fucking virus for the rest of my life. I fucking hate it.

I will not be in a very good mood when I go back and see my ID doctor in two weeks not looking forward to going to see her just to here her say everything is ok and your fine. They are just mad because Medicare is not paying much for my visit.

[Miss Philicia]

I would suggest starting another thread on this part of the topic in "Living With" to see what others on Medicare say. 

[Andy Velez]

Sorry to hear you're having these bumps in the road, Jerry. Things are never going to be perfect, but if you hang in I know they will get better.

And it's good that you have said what you had to here.

Find something to do tonight that you enjoy and give yourself to that.

Cheers,

[egello]

sorry to hear that jerry, and here i am complaining about all my silly problems....

just to let you know,,, in LA, if you go to the gay and lesbian center, they pay for all the meds, doctor's visit and etc through ADAP..... you do have to wait though...

go running! and do some yoga and meditation. or if you can afford it, get a good deep tissue or accupressure massage, it will make you feel a lot better....

[Robert]

Hi Jerry.

I don't get it either.  I'm pretty sure you're on Medicare like me.  Like PHilly says, I always thought Medicare wasn't that restrictive with its tests.  I know I always get both tests every 3 months, no questions asked.  But then I also have a Kaiser account which suppliments the Medicare.  But Kaiser is like any other insurance company. If they don't get full payment from Medicare, then they certainly wouldn't encourage both tests all the time.

But it doesn't really matter, does it?  I mean. you're get hassled and that's making you depressed and I don't blame you.  I would feel the same way.  Why can't they just do what they're supposed to do.  Why can't they do what you ask?  When you see your Dr next week, make it clear with him what you want. Forget the nurse.  She's never going to help you.

I don't know what else to say.  The virus is bad enough.  The meds don't help.  So do what you can to not let other people, even if it is your Dr, play with your mind.  Do what Egello says.  Slow down. Relax.  And if someone strikes you the wrong way, just turn around and walk away.

good luck my friend...robert

[Miss Philicia]

Not to hijack, but I ONLY have Medicare coverage.  I do not have that kind of insurance that supplements my Medicare coverage -- should I?  What happens if/when I go into a hospital?  What does Medicare cover or not?

[ybbat67]

Sorry to hear of your depression, it does happen to the best of us that is for sure, i quite often wonder why the hell am I still here, all alone and unlucky in love, when i personally think i have so much to give. I am also pleased that to date there is no restrictions in Australia on tests etc. I do hope Jerry you see the light at the end of the tunnel, thankfully for me it has always shone brightly in the end.

Wazza

[Miss Philicia]

I would suggest starting another thread on this part of the topic in "Living With" to see what others on Medicare say. 

[edfu]

Philly:  If you have only Medicare Part A and you have to go into the hospital in 2007, you would pay:

*$992 deductible for days 1-60 of a hospital stay for each benefit period

*$248 coinsurance per day for days 61-90 (heaven forfend) for each benefit period

*$496 coinsurance per day for days 91-150 (heaven double forfend) for each benefit period.

Jerry:  There should be no Medicare reason for your doctor not to request  CD4 counts, because laboratory services are among the few things that Medicare pays 100% for (after you pay the first $131 yearly for Part B-covered services).

[Miss Philicia]

Ed, do you have "auxiliary" or whatever it's called coverage for such instances?  If so can you PM me what info you know and what you pay, if I may be so bold?  I don't have anything, though my numbers are such that I don't particularly worry about a hospital stay though of course it could happen at any time.

I still think Jerry needs to move this thread to "Living With" and have PM Jan and asked her to do so.

[anniebc]

Hi Jerry

Moved your thread here and hopefully you will get more relpies to your post, sorry I can't be of help, I know very little about how your health care works over there.

Thanks again Philly for your concerns regarding Jerry's problems.

Hugs
Jan

[Jerry71]

This past week has been the hardest for me. I miss the days of going to work and having a life. To some of you that don't know how it is like to wake up each day and think to yourself well another day at the old grind be lucky that you still have a job and have decent insurance. I miss the time of being around people and getting a real pay check every other week. After being diagnosed with AIDS back in 2005 and having to quit my job because I could not stand on my feet due to Neropathy. It has been like living in hell. Yeah and when you get put on disability you think oh this is cool never have to work again. It was ok for a few months. But if you choose to go back to work the government can take your check away from you. Most of you have been working most all of your lifes in good paying jobs too some of us this is not so true. I was getting paid pretty decent working as a hotel front desk supervisor until I was to sick too work. I started working retail when I was a junior in high school did not go to college did not get a college degree.

Today Im on disability. There are just days I just want my ole life back my old friends my pay check, but that all changed in the blink of an eye. So just think about it the next time you have to get out of that bed and go to work each day and make that paycheck and remember you could be just like most of us waiting on getting that SSI check each month and not be able to go to work. Don't get me worng I trurly think most of you are doing a hell of alot better than me. Also some are just getting barely by on what they make.

As far as Medicare goes I was tickled pink at first to find out that I was going to get put on Medicare. I have Medicare part A,B,D. Every month I have to pay a dectable for my part D. I was under the impression from my ASO that this would have been taken care by there part. I leave messages on her machine daily and still have heard anything from them. So in order to keep my Part D I pay the premium each month. I get a messaly $10 a month for Food Stamps. For some reason the system thinks I make to much to get anymore than that. I did not get a CD4 count this time around due to having Medicare and my doctor thinks it is not very important issue to rely on so she only gets my VL done instead. My numbers since my last test result was 147 and VL has been undectable since Sept 05.

[RapidRod]

Jerry, I for one understand where you are coming from. I know how rough it is from going from decent pay down to nothing. It's not easy juggling everything each month.

[milker]

Jerry,

I'm sorry the system is fucked up and you suffer from it. This sucks.

Milker.

[Miss Philicia]

Well, the Medicare/CD4 issue is just INCORRECT INFORMATION and while I appreciate your frustrations, unless you personally seek out the correct information you will not change where you are with this.

Same with the ASO  paying your premium.  I'd say that instead of leaving eternally unanswered voice mails you go to their office and make an appointment and if necessary speak to the person's supervisor.

I'm just saying this because I went on disability 6 years ago, and the first 2 years were spent dealing with bullshit like this and sitting around frustrated.  You have to take the bull by the horns with these incompetents that run these programs, and if it means putting on some bitchitude then that's what it takes.  Frankly your doctor is just plain and simple ignorant about these cd4 tests.

And deal with the Med Pt. D issue soon, because yearly enrollment just started for the next 3 months in case you have to switch to a different insurance company to alleviate this premium issue.

[Basquo]

Jerry, baby, Philly's right.  Get in their face.  I was on the dole a dozen years ago, and I got the most of what I was entitled by putting my mug out there. And for someone who doesn't have income other than what they decide you need, $10 a month in Food Stamps is ludicrous. $40 or $50 would be believable, $90-$100 would be acceptable.

Stay strong!

 
Creighton

[edfu]

Philly, I have no problem with putting the details of my insurance story here, because the info might be of help to others.  What you refer to as "auxiliary" insurance to Medicare is, I believe, what is called a Medigap Policy, which would pay, amongst other things,  those deductibles and copays for hospitalization I listed above with just Medicare Part A.  Such a policy is with a private insurance company, and the range of coverage is such that there are Medigap policies A, B, C, D, E, F, G, H, I, J, K, and L.  The last I checked, the monthly premiums for Medigap policies run around $200-$300. 

There are also those dreaded Medicare Advantage Plans, which, if you have been following the news, have proved to be a windfall to private insurance companies and are a complete rip-off.  We have the formerly Republican Congress and insurance-company lobbyists to thank for that. National  Medicare advises that if you join a Medicare Advantage Plan, you don't need and can't use a Medigap policy to cover deductibles, copayments, or coinsurance.  The problem is that the Advantage Plans limit the doctors and hospitals that can be used; they must be in the insurance company's network.  In addition, their sales departments lie about the additional coverage that is provided.  In most instances, the additional coverage is LESS than if one stayed with the Original Medicare Plan.  Caveat emptor. 

In addition, it is important to note that if you have Medicare before age 65 due to disability, you might not be able to buy the Medigap (also called Medicare Supplement Insurance) policy you want, or any Medigap policy, until you turn 65.  Federal law doesn't require insurance companies to sell Medigap policies to people under age 65.  However, some states require Medigap insurance companies to sell you at least one kind of  Medigap policy, even if you are under age 65; Pennsylvania is one of them.  Of course, you have to be able to afford the premium one way or the other.  There are at present 23 states that require this. 

To be continued....         

[edfu]

OK, my personal story:

I was terminated from my position at a publishing company after 30 years of service at age 59 because of a now-typical corporate takeover, reorganization, and "de-graying" operation.  I decided to take a "sabbatical" of one year because I had never been out of work for one day since moving to NYC in 1963 and because I was paid a severance of 1 1/2 years' salary.  I continued with my company insurance via Cobra.  When my Cobra expired, I did not acquire new insurance because by that time I was certain I would find a new job.  It was the only time since I was 21 that I didn't have health insurance.

Then:  9/11/01.  I was also discovering no one was eager to hire a 60-year-old with 40 years' experience in the publishing field.  Then...I presented with KS and a CD4 of 29 and a VL of 16,000.  I was a longtime nonprogessor who finally progressed, having been infected in 1982 or earlier (I know this because I had been celibate since 1982, which is another long story).  I desperately needed to go on HAART, but I had no insurance, and I had been living off my severance, savings, and 401K.  I entered ACTG 5095 and acquired an Individual Direct Pay HMO policy with Empire Blue Cross/Blue Shield, which I couldn't use for a year because my AIDS was then a pre-existing condition.  When the double-blind study ended in 1995, I learned that I had been on Trizivir + Sustiva.  My VL was "undetectable," and my CD4 was 214. 

I then began to use my Individual HMO policy for HIV, dropped AZT from my regimen, went from four drugs to three, and went on Epzicom  + Sustiva.  The Empire policy required only a $5 copay for each drug and a $15 copay for doctor visits, with completely free labs.  Within three months my CD4 rose to 510, VL still undetectable, where it's remained.  My severance and savings had long been spent, and all I had left was the 401K.  I had been unable psychologically to pursue a new job since my full-blown AIDS diagnosis. 

Luckily, I live in New York.  I was ineligible for ADAP, because even though I had no income (here they allow something like $40,000+), they include assets, and I had too much left in my 401K.  New York State, however, has a program called AHIP (AIDS Health Insurance Program); they do not look at assets, only income, and I needed my 401K to pay rent, etc.   Administered by the Medicaid program, they will pay your insurance premiums.  So they paid my Empire Blue Cross Individual Direct Pay monthly premiums of an outrageous $695.04.

In September I turned 65, and Medicare automatically kicked in.  Empire's Individual Direct Pay HMO was to be automatically cancelled when this happened.  I would have to acquire a Medicare Part D, with the horrendous donut hole, and possibly a Medigap policy.  Through the efforts of Gay Men's Health Crisis legal team, at my instigation, and other organizations, Empire agreed to amend this cancellation policy, and convert my HMO policy to a Medicare "carve-out" policy, which would basically pay for anything Medicare did not, including drugs.  Medicare basically pays first, and then Empire covers the balance.  This is better than a Medicare Part D (no donut hole, and a prescription copay still at $5) and a Medigap policy.  The monthly premium was reduced to an outrageous $568.75 (the Individual Direct Pay HMO has since been raised to an outrageous $900).  And, so far, AHIP continues to pay for the premium.   

Thank you, New York State.  And that's my story.     

[Jerry71]

Those of you on Medicare what are you views?

Thanks Philly and Edfu for your views on Medicare are there any more?

[ademas]

I haven't had problems with Medicare as far as lab work goes.  My doctor gets a small payment from them for the blood draw, but the blood is sent out to an independent lab, and Medicare has always paid them.

My bigger concern these days is the 15% cuts Medicare is scheduled to make in provider payments over the next couple of years.  Twice this year I've been referred to specialists by my ID doctor, and both times the specialists wouldn't see me because they weren't accepting new Medicare patients.  I can only assume this will get much worse if Medicare cuts 15% off the meager payments they are making now.

I tried to enroll in a PDP when they were introduced, and it was a nightmare, to be honest.  Medicare said I was enrolled, and the PDP kept saying my claims were being denied by Medicare. This went on for over nine months.  I spent hours on the phone and writing letters, documenting every conversation, and I never did get it worked out.  My ASO finally allowed me to switch back to my old pre-PDP plan.  Unfortunately, I just got a letter stating that the old program (my supplemental insurance) will be discontinued in Jan. '08, and I will be required to switch to a PDP.  I'm hoping it will go much smoother this time.

And deal with the Med Pt. D issue soon, because yearly enrollment just started for the next 3 months in case you have to switch to a different insurance company to alleviate this premium issue.

Hey philly, are you sure on the 3 month thing?  I've called and been told that all new enrollment and changes must be made from 11/15 - 12/31.  Just curious.

[dixieman]

Mr. Jerry, I am sorry to hear about your struggles with medicare... but, I encourage you to take advice from others who've been through the same circumstances you now find yourself in... please keep us informed and do not stop taking your meds...Hopefully someone reading this post will be able to show you how to deal with a frustrating system... sincerely, John

[northernguy]

Jerry, sorry I can't help you out with the Medicare stuff but I just wanted to say hang in there.  I can understand the part about missing work and teh social aspect, my doc said much the same thing when I asked him about disability in the future.  Is there any kind of volunteer work you could do, to get out and be with people?

[Miss Philicia]

Hey philly, are you sure on the 3 month thing?  I've called and been told that all new enrollment and changes must be made from 11/15 - 12/31.  Just curious.

Actually no, I was not sure -- I was just recalling it from my head.  Maybe they only did a 3 month thing that first year when Part D started up.  I apologize for stating something like that without researching the facts... most unlike me!

[pozattitude]

Jerry,

I am sorry you are going rough a rough patch.  Depression is such such a terrible thing,  it only makes you feel helpless, and is it hard to shake it off or what?  I have been living with this for some 10 years now and didn't even know it, I was so ignorant about mental health.  I thought that because I never cried or feel sad all the time that I didn't have it.
I know it is easier said than done, but you have to believe things will get better. 
You deserve to be happy, you are worth it.
Take care my dear, and if you need someone to talk to, know that I am will be there to listen.

HUGS and lots of love

Rich

[tnboy]

Dearest Jerry,

     I know exactly how you feel and I wish I had some sound advice to give you but I am in the same boat as you being on Medicare. I have not been on treatment for well over 2 years now since being put on Medicare. I have tried seeking assistance from "EVERY" assistant program available but get turned down because I am on Medicare.

     I started working when I was 15 years old and was fortunate enough to get in over 30 years before having to go on disability so I do draw more SSD a month than many people but it is still not enough for me to afford my co pays on the meds I need. I cannot get any assistance with meds because I  draw too much to meet their guidelines, Just a few dollars too much but none the less my income limit is over the guidelines.

   I am not sure which state you are from but Tennessee does not have much to offer. In the state of Tennessee I cannot even get any Gap coverage or supplement insurance because I am not 65. Believe me I have tried them all and this is what they tell me.

  They all agree that the US health care sucks but they have their guidelines and that is what determines how much, if any, assistance you can get. I was very shocked to learn just how little Medicare pays on any bills. It is a wonder "ANY"doctors will see Medicare patients and Medicare is what most all of our elderly people are on. It is sad that the US cannot take better care of their elderly let alone the rest of us who have need for it sooner than we had hoped.

  I wish you the VERY best and hope you feel better soon!
Mike

[cmhjeff]

This week has been very stressful for me.

DITTO
Sorry you are going through a difficult time. Can't say I know the ins and outs of Medicare yet because I still have hospital coverage only but I do understand the stress. Last Monday I found out that I'll probably never drive again in the state of Ohio because of my hemianopia diagnosis and then Tuesday I got a UPS delivery that turned out to be my final notification from my employer of 15 years of my pending termination on October 21. Hell when I didn't die from PML in the first year I always had hope that I'd go back to work but in 10 days I'll have nothing to go back to. With my luck I'll die shortly after my termination so Jeffrey won't even get my life insurance.

I miss the days of going to work and having a life. To some of you that don't know how it is like to wake up each day and think to yourself well another day at the old grind be lucky that you still have a job and have decent insurance. I miss the time of being around people and getting a real pay check every other week. After being diagnosed with AIDS back in 2005 and having to quit my job because I could not stand on my feet due to Neropathy. It has been like living in hell. Yeah and when you get put on disability you think oh this is cool never have to work again. It was ok for a few months. But if you choose to go back to work the government can take your check away from you. Most of you have been working most all of your lifes in good paying jobs too some of us this is not so true. I was getting paid pretty decent working as a hotel front desk supervisor until I was to sick too work. I started working retail when I was a junior in high school did not go to college did not get a college degree.

You're not alone Jerry I miss working 40+ hours a week. I miss the human interaction and responsibility that comes along with a job. I wake every day, eat, take meds, Jeffrey puts on my ankle brace, listen to Sirius Out Q in the morning and then I begin to think "what next". Recently I was asked to do gather names from the auditor page and do labels for our community association and that small task made me feel so good and needed but even with my disabilities that only took a few days.

Hope this week is better and less stressful for you.

Jeff

[mjmel]

Jerry, I do not have any advice concerning medicare. I note that you are getting plenty of advice, however.
Mainly, I writing to suggest something to make your days better.
Get Laid. (Make some lucky guy smile. A big smile, too)
 
Mike

[AlanBama]

I understand what you are saying Jerry...

I am so fed up with the whole medical system right now, it makes you feel as if you are fighting a losing battle.

You're in my thoughts and prayers, my friend.

Hugs,

Alan

[edfu]

http://www.medicarerights.org/101.html

This is an excellent advocacy site for answering questions about Medicare.  Be sure to sign up for their e-mail newsletters as well.   

[Miss Philicia]

::bookmarks in "Health" folder::

[Jerry71]

edfu thanks for the site information on Medicare.

[pozniceguy]

Jerry your frustration with Medicare is understandable..you already have some good advice on this thread especially about   the web site.......I have been on Medicare for more than 6 yrs......I know that some of the requirements seem petty and mean but keep in mind that most of this was because of Political meddling  not rational  medical advice.......Like any politically driven system you can get some action through your "politicians"   be sure you track ( write down) and document all conversations especially conflicting or wrong answers and summarize them in a letter to your state and federal representatives.......If nothing else this will keep you very busy..... Philly's advice about getting in someones face is good if you can find someone who gives a shit....document!!!...Dr's do not have to accept Medicare patients under certain circumstances but most do accept because virtually all Hospitals participate in some form of Govt program and any Dr on staff at that Hospital essentially agrees to treat Medicare patients even when they are not hospitalized...once they "agree" to treat you they "agree " to accept the Medicare payment and are FORBIDDEN BY LAW TO TRY AND COLLECT ANYTHING FURTHER FROM YOU........
As far as ordering tests.. someone already pointed out that Medicare has very few limits on testing, especially lab testing  so your Dr is just not informed ...The only time I have had to have a Pre-approval for a test was something called a PET scan...very expensive..cost to govt $3000...Dr requested it and they approved.  so insist on a full set of tests every visit ( 3 or 4 months) my Dr draws about 5 or 6  vials of blood each time and does just about a full panel as well as the HIV specific tests...He has only done the genome test once.....

This is called being responsible for the care you get...the old adage that you get what you accept can  usually be applied here....modified by different states unfortunately...If the services are available in your area then you should be able to access them.....
As a last resort I know that there are some groups that operate "food pantries" and various assistance programs not funded by govt and are usually very local ,  look up the "Helping Hands" group in your area......If nothing else they will be pleased to have you as a volunteer...


Nick

[Jerry71]

I know coming Wednesday I will not be a very happy camper with my ID doctor. I have done nothing this week but  sit and dwell on having my appointment with her. This is the first time she has every pulled this shit of not taken full labs. It has really pissed me off to know ends. My numbers have sucked and have slowly climbed up my highest CD4 count was 174 and the last labs were done in June and they went back down to 147. All this has made me so upset this week. 

Thanks everyone for all the advice if I can just make it till next Wednesday I will be better.

[AustinWesley]

Hey Jerry,

I don't know a lot about Medicare other than what my parents tell me and a few friends and I'm trying to learn.   Edfu posted a good link there so hopefully that's some benefit too.

The numbers I know are a bitch and we can all get tied up with them. 

You've always been a very nice person to me and when I was at my lowest offered out a friendly hand.   I hope I can do the same for you.

I think you've done a great job of bringing up an important topic here and it should make you feel a little better that others are learning and benefiting from your shared experience.

Hugs,

Wesley