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Author Topic: An update  (Read 1031 times)

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Offline Solo_LTSurvivor

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  • Posts: 1,176
  • Twerk Baby Twerk
An update
« on: October 01, 2008, 03:05:01 PM »
The latest

I originally wrote about a situation that I've been dealing with earlier because I needed to vent.  As it is too complex to summarize, you can read and get up to speed here: http://forums.poz.com/index.php?topic=22383.0 

I wanted to vent a little more, as I still have not really been able to remedy this situation, despite the fact of devoting what has been a FT job + overtime into it between all of my various medical upkeep appointments.

Basically, ambulance chasers do not feel there is enough money to be made, if I were to even attempt to bring litigation into the picture... which was never my intention to begin with.  I just want to be able to have the freedom of choice to see whomever I feel is most qualified to provide me proper care, but I'm getting ahead of myself.

All of the various organizations which I've consulted with all must be residents of Planet Helpless because they just do NOT get it when I have attempted to explain exactly what it is I am trying to do.  (And then there are many who just don't want to put forth any effort other than getting paid, but I won't get off on that tangent.)  I just want someone with "pull" to assist me in getting money redirected because sometimes persons who seem to be of importance get more accomplished than just a lowly consumer, but I'm getting ahead again.

I knew there was no chance in hell that I would be able to sue anyone so I accepted the fact long ago that I would have to basically compromise in order to be happy with the resolution. 

I understand the rules and regulations of Medicaid, when it comes to them having to justify things being "medically necessary" before they will pay for any procedures.  I have no problem with this.

My problem is with them forcing me to go back to the original practitioner whom I do not trust, period, in order to seek resolution because they refuse to pay for anything multiple times.  So at this point it is up to ME to do all of the dirty work and attempt to force the original clinic to return the money they were paid by Medicaid in order to put the money back into the "cookie jar" in order for me to be able to seek out another practitioner who can hopefully provide better service than I originally received.

If not, I can pay out-of-pocket, or just suffer for the next FIVE years because Medicaid's archaic rules stipulate that they only pay for a complete denture every so many years.

Never mind the fact that they are also paying for LIQUID nutritional supplements because I am not getting proper nutrition from not being able to eat food.

It is utterly ludicrous for them to realize that not every healthcare practitioner is qualified to perform the job. 

Maybe if they would allow me to seek treatment elsewhere because I require the services of a SPECIALIST and not someone who is a GENERAL dentist who does not understand that despite the fact we all have mouths, they are not all the same -- and maybe if I am resigned to wear a denture that I did not need to begin with, a PROSTHODONTIST who specializes in replacing missing teeth and making dentures would do a better job in fitting me with a denture that would function  ??? And just maybe they could stop paying the outrageous amount for nutritional supplements because I would be able to hopefully eat more food  ???

This is like saying you should continue seeing someone who cut off the wrong limb when they were only qualified to assess your vitals.

I just don't get why Medicare (which is my primary insurance) does not have any dental coverage to begin with.  Even with real health insurance, you do have some type of dental options, albeit they are sometimes limited.  It amazes me that none of the people who make the rules have no clue that oral health is practically one of the main gateways for people being in good health and if you have mouth/dental problems which remain untreated, you can virtually cause all sorts of other things to go wrong.

No doubt I should have no problem when I see the dermatologist soon for Scupltra treatments because I now look like a walking skeleton suffering from extreme malnutrition.  At least that can be billed to Medicare.  And when I need to start psychotherapy for my non-existent self esteem, guess that will be more to add on to all the money being paid out of my behalf since these are nothing more than office visits, which are covered. 

I've watched myself change (for the worst) right in front of my eyes over the course of this entire fiasco.  And when you tell your doctor about watching your face sink in and the effect it has on you, all they can think about is their patient load for the day because they've got to corral them in so the facility can get subsidized and generate that revenue.

Amazing.  I still get pissed off beyond belief when I think about the fact that one tooth led to the state of disaster I'm in today  because the system doesn't lend itself to certain practitioners feeling that they can provide services unless people have MONEY. 

I guess I should be ecstatic though, I am STILL living after all these years of dealing with this condition, which is now manageable

I never would've thought that it wouldn't be the hiv that did me in and got the best of me.
« Last Edit: October 01, 2008, 03:10:11 PM by Solo_LTSurvivor »
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: An update
« Reply #1 on: October 01, 2008, 06:37:44 PM »
Hi

Sounds like you have had a really frustrating time so far; kind of hesitate to offer suggestions that might involve more work, but from a distance looks like there might be a couple of pressure points available:

1) Applying the potential for public exposurevto embarrass the clinic into refunding the money. 

In another thread, one member used a newspaper to call the DMV when they came up with a seemingly irrational decision to deny an HIV Poz vanity license plate. http://forums.poz.com/index.php?topic=22956.msg292093#msg292093 The threat of media attention appears to have worked    Is there anyone in the media you could interest in your story?  AARP has a monthly column where they intervene in consumer disputes and so do many newspapers.

2) The other pressure point is Medicaid/Medicare.  If you call the office of your Member of the House of Representatives or your state's Senators  they can sometimes be surprisingly resourceful in getting unreasonable decisions revoked.

You may have already looked at these options or they may not work for you for other reasons, but I hope you can get some relief.

(I'm starting a new dentist Friday myself)

A



5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Solo_LTSurvivor

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  • Posts: 1,176
  • Twerk Baby Twerk
Re: An update
« Reply #2 on: October 01, 2008, 11:34:17 PM »
Hi

Sounds like you have had a really frustrating time so far; kind of hesitate to offer suggestions that might involve more work, but from a distance looks like there might be a couple of pressure points available...

You may have already looked at these options or they may not work for you for other reasons, but I hope you can get some relief.


Thanks for the response, A. 

Believe me, I am well aware of all the avenues I need to check into pursuing as I strongly feel there is a need for ONE person to speak out and bring these ďhiddenĒ issues out into the open, as I am certain many people out there have suffered unnecessarily because they felt they had no options.  I want to do whatever I can to be that person who starts the balls rolling. No one needs to watch themselves age 10 years after taking the advice of someone who recommends treatment because no one wants to correct the mistakes they caused.

Itís hard when you approach agencies for advice who supposedly have experience when it comes to advocacy and discover you have to do everything yourself.  I spoke with one organization where one of the staffers told me they had an inside contact at Medicaid which they had allegedly spoken to and were awaiting a response regarding my questions.  Every time I tried to get in touch with them to follow up, they never returned my messages and I tried thousands of times.  When I finally got them, they blew me off ó so that cemented that if anything is to be done, I would have to do it myself, which I am used to.  I remember when I had to go on disability some years ago and I had problems with my landlord while I was waiting for the determination to come through.  I spoke to an organization and the person I was getting advice from was more worried about the fact that his lease had run out and he needed to find an apartment.  You can imagine what kind of impression that left upon me, as I was not familiar with the system, benefits, or aware of any options at my disposal.  No wonder I ended up almost dead from PCP from all the stress dealing with all that drama.

I have been thinking about the media options, but I want to utilize that as a last resort, if none of the other avenues pan out.  You know, do everything from A Ė Z within my power first, and leave some things in the arsenal for when I was feeling especially desperate.

As far as trying to get the pols to work any magic, itís rather hard when one of your senators is wrapped up in their bid for the Oval Office and the representative who has been in office for an eternity is under scrutiny for tax evasion, having too many rent controlled apartments, and one scandal after another constantly surfacing.  They donít have time to think about the people they are supposed to represent. But thatís to be expected when one lives in one of the most corrupt cities and states where we all have it instilled in us from birth that we have to look out for #1 so this is nothing new to me, as I was born here and know how things operate in 'Metropolis.'  I already know what I have to do, it just feels good to blow off some steam and attempt to recharge in order to be able to move on to the next phase. De-stress, if you will, so I can continue my focus.

(But) if I am not able to get the financial situation easily reversed on my own as I know it can be done but it will prove to require a fight, my next step is blabbing to the media, posting on every blog which has a national following and everything else I can think of because technology will be that ďace in the holeĒ that will hopefully get the results I want from putting that needed pressure/exposure out there for the world to see. 

Again, I want to save that as my last option.  I know ultimately that I will have to step up to the plate in a big way if I intend on doing whatever I can to prevent this from happening to someone else in the future, but I need to be sure of my footing first. I canít help anyone else, if Iím not able to help myself first.
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

 


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