My ACA horror story...

[Oscarmonster13]

I'm not sure if anyone here will understand, but I had to vent about how the changes in healthcare have made my life a living hell. I know that everyone is sharing these success stories, but in my personal case...they "fixed" it and it wasn't even
broke...

I have been on medi-CAL for years, going to my local clinic and seeing a couple good docs whom I have built a rapport with over the years. I was diagnosed with Psoriatic Arthritis back in 2008 and placed on a TNF-blocker (injection)...after trying a pill-type of medicine that was like chemo and caused more side effects than it helped symptoms...
Anyway, so I have been in remission for five years with this medication.

In January, MediCAL split into two "options" - CA Health & Wellness or Anthem Blue Cross - I chose the former. For the first two months of the year I was unable to verify my coverage to get the labs requested by my Dr. and had to call twice to request my membership card be re-sent. Meanwhile, my prescription is not coveed, so it has to be pre-authorized. It was sent thru the channels from the Dr. Office to the HMO, to a separate SCRIPS service several times and denied throughout the process...my Dr office wasn't even sure who was supposed to do what at this point.
Meanwhile I am without this medicine for two months and come not just out of remission...but with a vengeance. My skin is raw and peeling off like tissue paper - I cannot explain the constant pain.
I finally got it to finish my lab after running back & forth for the past 2 weeks and the nurse at my Clinic even had to go all the way back to my original diagnosis and send the records. After a peer-to-peer review yesterday - DENIED completely.
So now I am at square one. The Insurance co. gave a list of five other medicines I have to try for three months before they will reconsider giving me the medicine I KNOW WORKS!
This is a total case of the Insurance Companies telling my Dr. how to do his job...and I am the one suffering for it.

So tomorrow is another day in this battle. I meet with my Dr. to look at the five meds they reccomended...three of which are from the same derivative of the one I took before before to no good avail. One I am allergic to the iongredients, and the other causes Hypertension, which I already have...so it could be too dangerous.
I have to request an Expidieted Appeal from CA healthe & Wellness...and am also filing for an Independent Medical Review from the State Health Care Dept...

Meanwhile the water in the shower stings...my clothes hurt...I am chronically distracted and in pain...and ya, probably a bit depressed too. Not to mention feeling ugly and still trying to be a mom to my kids and live my LIFE...
I wish I could slather my body in lidocaine or just get out of it for a while and rent a new model...

Not sure why but I just needed some support here...

[PoliticAverse]

1. Best wishes to you! n/t

[mucifer]

2. Sending hugs.

[riqster]

3. I feel for you. That was my son's life (until he died) before the ACA.

We need to elect shitloads of progressive Dems this year, so we can get single payer.

As long as insurance companies are allowed to overrule doctors, such stories are going to keep happening.

[LumosMaxima]

4. I'm sorry for what you're going through.

I had a supervisor when I was in college who had psoriatic arthritis, and I have lupus myself, so I have some idea how rough it can be. I don't have any advice, but I'm sending you good thoughts.

[Oscarmonster13]

6. Immune diseases are the worst...

:hugs:

[Jesus Malverde]

5. I've said the success of the ACA will not the in delivering insurance it will be in the delivery

of healthcare. I am sorry to hear the insurance companies are the same assholes this year as last.

You'll likely be attacked for not doing enough research before you made a choice, as if being in an adversarial system, where health is not the bottom line is proper status quo.

Hang in there, good luck!

[itsrobert]

7. I kinda know how you feel

It took over 20 years for the military Tricare system finally gave me shots for my severe neck pain. They kept sending me to physical therapy and trying pain pills that provided no relief or was temporary. The first set of shots didn't work, but the second series did the job.

[Auntie Bush]

8. I'm so sorry and I'm sending healing vibes your way.

Have a speedy recovery with as little pain as possible. Bless you and good luck!

[rocktivity]

9. This DUer solved his wife's problem

by going directly to the drug company:
http://sync.democraticunderground.com/10024696136


rocktivity

[Oscarmonster13]

10. I had a friend reccomend that

thanks, I'll check it out...

The medicine is Enbrel, it's a pretty hard core shot that knocks out your immune system.

[rocktivity]

12. Isn't that the one golfer Phil Mickelson plugs?

Their site has a payment assistance page!

http://www.enbrel.com/pay-for-ENBREL.jspx


rocktivity

[Oscarmonster13]

46. BTW called them and they opened a claim for me

they are requesting the denial from the HMO and then will call me back to (hopefully) get me hooked up with a foundation that helps people who can't pay for meds... *cross fingers*

[vanlassie]

11. Some continuity of care. Is the doctor providing thorough documentation for the expedited appeal?

That this has thrown you out if remission? See if you can include a personal statement about the effect on your life and family.

[Oscarmonster13]

13. that's the term!

"continuity of care"... must remember that one!

[vanlassie]

14. They should have insured that you would NOT be harmed by switching coverage. It's imperative

that they be made fully aware of the medical damage thus has already caused, because THEY could be held responsible ( assuming you were to sue). And letting you have Embrel us no skin off their nose when they consider the alternative which is a lawsuit for damaging your health. Make SURE this is fully spelled out. You only get one shot at this. YOU describe your pain and disintegrated condition clearly and graphically.

[pennylane100]

15. I do not know if this will be of any help or not

but if you have a doctor who is on your side, he may be able to put pressure on the insurance company. My kid treats children with severe genetic disorders. When an insurance co. did not want to pay for some very expensive meds, she said that she felt that the only way she could care for the child in a responsible way, without the prescribed treatment, was to admit her to the hospital in order to monitor her condition, possibly for quite a while. The company decided it was cheaper to provide the needed meds.

Good luck, please keep us posted.

[gulliver]

16. Will need links. Otherwise, I assume this is false.

Sorry, but this is not an opinion piece. It purports to be a statement of fact, so it has to be supported with independent evidence. Otherwise, it is meaningless. A Republican could be posting a carefully crafted lie. How can we tell the difference?

[Oscarmonster13]

20. wtf?

links? I am sharing personal experience...you wanna see the pics? Well sorry I am not gonna post my body online just so you can say whether or not I am lying... pissoff

[gulliver]

29. Looking a whole lot faker now. No links...

...and you didn't even try to say you weren't lying. Any honest, sharing, caring poster would have done that. And they wouldn't have been pissed but understanding that people on a Dem web site want something besides their anonymous word for the "horror story" they are trying to sell.

Your OP looks like it is just (more) well-crafted propaganda. Your response to a challenge shows clearly that it shouldn't be believed.

[Oscarmonster13]

30. please

my anger comes from the fact that I am in agony and the last thing I need is someone calling me a liar...

what kind of links do you think would prove anything anyway? Like I am going to provide my medical chart online? weird.

I think you are just trying to provoke - and I am tired of battling this all week so I am not going to battle with YOU

[gulliver]

39. Your OP is a really good example.

You are wanting people to be horrified of the ACA. That's what a horror story does, and your OP is a horror story. You titled it so. So why should anyone believe "Oscarmonster13" telling them that they should be horrified of the ACA? Remember, there are a lot of really nasty-minded halfwits on the other side who want people to be horrified.

The ACA is helping millions, freeing them from fears and worry, saving their lives and health, but Oscarmonster13 wants to horrify people about it. Why?

Everyone should ask themselves honestly, "If I were in agony, would I be spending my time going to Democratic Underground and posting an anti-ACA fear and loathing story?" I'm damned sure I wouldn't be. It just wouldn't be something I would do. It's not something that is really done by people, I claim, in real life.

I realize that for some people, this discussion is unbearable. The only thing I can tell them is that we live in a world where one side has some "people" who applaud when they hear someone say that the poor who are without insurance should be allowed to die. That's verifiable.

[Oscarmonster13]

41. ...

look, I come to DU as a family of like minded people and because I needed some sympathy and support.

I even said in my Op I know there's people who are getting helped, but WTH is going on with these insurance companies denying every medication I have been on just because of the switch-over

I *AM* one of the poor, my coverage is through social services/Medi-CAL so whatever you mean about people wanting the poor to just die...Ya, I get it and feel it for sure, I'm f-in living it.

enough, I am done justifying myself

[OwnedByCats]

48. You know, it takes a lot of nerve to call someone a liar

without any evidence whatsoever. The ACA has helped many people, but there are others that have been hurt because insurance companies are always going to find some way to screw it's customers because the ACA has not addressed all the problems one can run into. Even some of the most die hard fans of the ACA recognize this, so what is your malfunction? You think everything is all peachy now because of the ACA? Sorry, that's not reality. You don't believe that, tough shit.

As long as insurance companies have any way, any loophole to screw you, they will. The only thing that makes this an ACA problem is that it hasn't forced the insurance companies to be completely 100% fair. Oh it helped in some very key areas, don't get me wrong. I'm hoping more regulations will be added to prevent more of this shit from happening. Or better yet, Medicare for all because I know what it's like not to have an insurance company mess you about because I had government single payer, believe me it's absolutely awesome compared to dealing with for profit insurance.

This one sounds legit to me, she's done everything short of begging the drug company for help. She said she would try that next. Time will tell if anything changes. She came here for support and you shit all over her. Well done.

[B2G]

25. Here's a link for you

[bigwillq]

35. BWAH!

[LWolf]

17. I'm so sorry.

[marzipanni]

18. Why not try a natural remedy while you're working on this?

<snip>

"I have had pustular psoriasis for over 35 years. I have done it all to try to get it under control…over 6 different dermatologists, taken all the drugs they prescribed such as:Humara, Enbrel, (these 2 drugs cost about $3,000 to $5,000 per prescription) Cyclosporine, Methotrexate, Soriatine, Photo Therapy (my cost with insurance was $60 a treatment. My dermatologist discounted it for me. Had it 3 times a week) Raptiva ( one infusion of this cost $8,000, and they could not even give me a whole infusion because it made my blood pressure spike to 180/98 when they did),and can’t remember what else I have taken.
All of these drugs knock your immune system out. I was on Peoples Pharmacies’ website one day (for another reason), and a lady had emailed them that she also had had psoriasis for many years. Someone told her to eat a “bunch” of cilantro a day. She said she did, and it cleared her psoriasis. Well, a bunch of cilantro is a lot to eat.
My sister's massage therapist told me about the essential oils that she sold. She had cilantro essential oil. I tried it along with thyme. I also started a gluten free diet. Lo and behold, it cleared my psoriasis more than anything ever has."

This is from a website by a Joe and Terry Graedon. Read this first to reassure yourself that the Graedons are a legitimate source of information-

http://www.peoplespharmacy.com/about/

more personal emails to the Peoples' Pharmacy website about natural treatments for psoriasis-
http://www.peoplespharmacy.com/2013/02/18/accidental-discovery-eases-psoriasis/

[Oscarmonster13]

21. thanks, I have done a lot of things...

I was at my healthiest when I was eating Macrobiotically and meditating daily. Stress is a huge factor in this, what sucks is that I am in a feedback loop of pain and trauma right now and don;t feel like anything matters... it sucks how this stuff affects you personally...feeling ugly, in pain, etc...

I will check yyour links though and will see what I can try next. Maybe a good cleanse would set things at a baseline level?

I am also trying to get in to see the acupuncturist and a hypnotherapist. My mom read that skin disorders are extremely responsive to hypnosis, and I am willing to try anything.

[lumpy]

27. Thanks for the info in your post. I'm Interested in your natural remedy info. I have tried natural

medicines for other health problems and have found them to help in many instances....... I have found that using different commercial medications (some combined with others) had done more harm than good. I'll give cilantro /thyme a try.Thanks again.

[pnwmom]

19. If the other "option" covers this, is there any chance you could switch plans?

I'm so sorry about the nightmare you've been going through.

[Oscarmonster13]

22. the other option is gonna be the same

and the doctor is not an advocate at all...he was no help today

[lumpy]

28. Doctors should be working on patient behalf. So many have let their industry be put in the hands

of others consequently diminishing the quality of health care. My doctor of many years took early retirement because he felt he could no longer fight the 'interloper' foothold in the medical profession. Sad

[magical thyme]

23. I'm so sorry...

no advice to offer other than what others have already suggested. Go directly to the drug company -- they may be able to help you.

[Oscarmonster13]

31. Ya I got that part rolling today earlier

Called CA Health & Wellness and got an expidited appeal going...then called the Enbrel company and they opened a claim...supposedly they work with a number of foundations who help people pay for meds... (seriously fucked up stuff, though, that it has to even come to this)
Meanwhile I guess I have no choice but to do the three months with the other bad stuff, hopefully the side effects aren't too horrific. It's like Chemo medicine, so it affects the GI tract pretty badly and the methotrexate makes your hair fall out too..I guess if I look on the bright side, i could lose some weight from all this... :/ (soooooooo not funny, but WTH all I have is my sense of humor at this point)

[JaneyVee]

24. Sorry to hear, sounds painful. Definitely file an appeal.

[shenmue]

26. {{{hugs}}}

Peace.

[Catherina]

32. I'm so sorry Oscarmonster13. Please check your mail here

I hope this gets resolved ASAP. Please check your mail and consider writing to your Congresspeople politely raising holy hell and requesting their help.

[Oscarmonster13]

34. you know what sucks?

I sit here and feel awful and cry and fight and struggle...and my illness - while still chonic, painful and debilitating - is not a fatal type of illness. Sheesh, Will Pitts wife has MS and this happened to her, too...that's just horrific.

I admit - don't understand the in's & out's of the new ACA nearly as much as others here. I really never grokked the difference between single payer and what the bill ended up being...But I guess the insurance companies ended up with all the control somehow, I get it now. And if the doctor isn't inclined to fight for you, you end up having to be your own advocate...on top of the illness and the exhaustion, you have to fight for yourself... they WANT me to just get tired and give up. Maybe that's what will make me end up fighting more.

(thanks for the suggestion and the support - you and everyone here)

[Catherina]

37. I know :(

I feel for both of you and everyone else in this boat. Please don't get me started on single payer because many people fought as hard as we could but profit won out.

I hope you'll have good news for us when you follow up! Don't get tired

[LiberalAndProud]

33. Gentle thoughts for you.

I'm sorry your voracity was questioned. There is no excuse. Sure, there are some who will play on our emotions in this anonymous setting, but I'd rather be played than show callous disregard for real, unremitting pain.

I hope you find real relief real soon. It's important to hear the times when the ACA failed in order to fix the problems. Best of luck in getting the treatment you need.

[Oscarmonster13]

36. thanks

yes, gentleness is a word I need to work with right now...

I appreciate your understanding and believing in me...And yes, I want to get this fixed...not just for me but for everyone. I think personally we need to just gut the damn insurance industry, but I tend to think in "non-diplomatic" terms sometimes

[XRubicon]

38. The Horror

[nadinbrzezinski]

40. You are doing what you have to do

Not what you should.

Some here will attack cause it's all ponies and farts...ignore them.

Apart of moral support though, I have none to give you and will abstain from even a virtual hug. It could be virtually painful.

[Oscarmonster13]

42. thanks Nadin

I know about the hugs...I feel so bad telling my kids "dont touch me!"

[nadinbrzezinski]

43. Depending on their age

Sit down and explain it to them. If young. "Daddy is sick, and it hurts" use a toy, to show them if there is anywhere you can tolerate it, if at all. Older kids, show them the skin lesions and they will get it. We do not give enough credit to our kids. Younger kids they will think worst things though.

[Oscarmonster13]

44. ya, they are 11 & 12

so they "get" it for sure...they even understand that mommy is not getting her medicine and is struggling...they hear me on the phone and hear me scream at the receiver when I hang up! oops...probably not good, but I am doing the best I can

My son is squeamish so he doesn't want to know how bad it is...but he still has empathy thank goodness. My girl is the one who is so sweet and helpful

[nadinbrzezinski]

45. Squeamish is good.

We really do not give kids enough credit.

I learned that one as a medic. To give them credit. Of course a broken leg is a whole different kettle of fish.

So good, they are definitely old enough where they get it intellectually. Don't be bashful to ask them for help with home chores. That empowers them.

[Oscarmonster13]

47. UPDATE

Not only did the Dr not help today...he didn't even go over my tests results or my xrays, he just picked the first med of the list and said "okay, see ya in three months" (He was nonplussed by my anxiety and tears and did not even ask to see my skin...)
I looked up this medication and you have to monitored closely because of LIVER FAILURE - supposed to have a baseline liver enzyme test and once a month for the first six months...IDIOT


To top it all off, now the HMO has denied yet a third medication, my antidepressant, which I have ONE left...

So it's back to the clinic Monday to see whoever will see me, get the tests ordered and maintenance set up for those tests...AND see if they can help me figure out the antidepressant thing...switching those is not a good thing, I'm scared now about being a total basket case...
FUCK! ...and on top of all this I am supposed to be taking care of my kids and the house and finishing SCHOOL...I can't concentrate for shit right now...

LIFE WINS, I GIVE UP