Semi New Here, Frustrated With System

Welcome Greetings and Introductions
1

Hello To All,

I realize I did previously post as an introduction, but there is just so much to say. So I am trying one more time, since I am new and unsure of how all of this works. Besides my other post did not give much information.

Anyway, I have had PsA for almost 4 years, actually longer, just did not get diagnosed till 2009. I have other health issues as well that I am being treated for. I have been on multiple anti inflammatory meds, I have asthma, fibromyalgia, IBS, Ulcer, Carpal Tunnel, a severely injured back, vertigo, and other minor health conditions. Many of this has been a gradual over the years things except for my asthma and PsA. With the PsA I am being treated for the condition but not to stop the actual progression of the disease, that I found out from tmbrwolf329. I almost feel as if I have had this longer but no one really knew. Maybe just me looking to blame. But what I do know is that there is so much valuable information out there. This I learned from tmbrwolf329. Thank you so much for all of the valuable information, and links to other info. You have helped me so very much.

I have already begun to fight for my rights. I have no income, no medical insurance and have been turned down by pretty much every program I apply to. If I was homeless here in Michigan I could get the Medicaid, but I live in my husbands parents home, thankful for that or we would be homeless. I applied for Obama Care and was denied for that. Can not get Medicaid, or Medicare. I am on my first appeal for SSI. I have been unable to get any care for my health needs. But now I may have other options and I am going to try and get what I can to keep me alive and breathing.

Finally, I hope to get some great info about all my issues, which range from; no support, to not the right treatment, to finding the medical care that I need, or maybe even I can lessen the pain by eating certain things. This too is an issue for me, I have no appetite either. I weighed 165 lbs one year ago, now I weigh 115. I am getting way to skinny. Anyway, I did make some calls and found some programs that might help, hopefully I will not get denied.

Well I guess that is it for now. I am looking forward to meeting others like me. My story goes on, but my health needs continue. I know this is where I can get great advice and talk to people like me. I love to chat and learn new things, so I can help others too. Peace to all. Mary

2

Yikes, Mary, that's crazy you're having problems with insurance. Various states have various criteria for insurances and it just doesn't seem like it's the same across the board. Makes me wish we had universal health care like other countries.

3

Aww Angel, thanks for the kudos, but it is really not necessary. I just want to make sure you feel welcome and that you are getting answers to the questions that you have. I'm certainly no expert, and am wading through the system myself! I have relied so much on the information that I've learned here on this support group. I'm happy to pass anything on that I've learned and to share my experiences. One of the most important things you need to remember is that every person, every person's disease, every person's experiences, every person's body are all unique to that person, so what you hear from us may not be your experience. There are days when I read other posts and think to myself: Wow, I'm not having THAT many problems, I must have a mild case. But then I look at my arms and legs, the thousands of patches of Psoriasis, and the many, many places that are visibly inflamed (or the ones that hurt like crazy, but aren't visually inflamed) and realize that my case is pretty awful too, just different. Pain is relative. And I can guarantee that every one of us on this website are hurting in one way or another. The other really really really important thing to remember is Seenie's watchwords: Fear the disease, not the treatment. Early, aggressive treatment for the PsA is your best bet to living a full, happy, and fulfilled life and to prevent further damage from occurring. I'm really happy to hear that all your phone calls are starting to pan out. Don't give up! Stay warm and positive, my friend!

4

Hello,

I am curious as to why you were denied for Obamacare. Were you denied a subsidy to pay for it or were you denied the insurance? One of the main selling points for Obamacare was that they could not exclude you for pre-existing conditions or a lapse in coverage. If they denied you because of either you have grounds for appealing. I would contact your local social services agency as they can help you fight this. You should be eligible for food stamps since you have no income. You can also look into unemployment if you lost your job.You need help and your local agencies should lead you to help. You can also look into local churches who provide group insurance.

5

Some states (21 I believe) declined to pass the expanded medicaid program which was made optional in the supreme court case. For five years it was 100% funded declining to 90% funded after five years. Consequently there was a hole. The "subsidies" were/are simply a tax credit. The catch with that is you have to be working enough to qualify. There are a number of folks who do not qualify for medicaid for a number of reasons that don't earn enough for subsidies under AHC. These folks WOULD have been covered by the expanded medicaid program.

Now this may sound poilitical and I don't care, but in their rush to stop the whole program and failing at it the Conservative block made decisions at the state level to insure that those the most in need would be denied medical care. Of course guess who's being "blamed"

6

Hi AngelMary,

Welcome to an excellent group. There are some very knowledgeable people here. The important thing for you is to take care of yourself. I wish I had started treatment sooner, but I didn't want to be seen as a whiner. I wonder now if I would have lost as much physical ability as I have over the last 2 years.

One thing that many people do not know about are the assistance programs offered by the drug companies. Many of these drugs are very expensive. You may need to apply directly to the companies. I am only paying $5 for my Humira. I have insurance and my co-pay would be $25 except for the assistance program. The drug company has many programs and they suggested that my sister apply when I mentioned that her insurance did not cover Humira. They said they have programs that provide the drug for free if the patient needs it and their income is low.

Of course you still need to see a doctor in order to get prescriptions first. Don't give up on Social Security. They have made it harder to prove disability, but keep trying. Get an attorney that will only charge for a portion of the benefits, only if they succeed. Hang in there.

Marta

7

Encourage Foundation: Enbrel

Abbott Foundation Assistance Program: Humira

Johnson and Johnson Patient Assistance Program: Remicaide

Just to name a few that I've used. :)

Also..there is a place called RxOutreach.org that helps with other prescriptions, though I'm just signing up for it and am confused about their pricing policy for Methotrexate (looks like it won't save me more than about $13.00 every 3 months so I'm not sure I'll use this program for the MTX)

8

I could be wrong but I think you can get methotrexate for $10.00 for a 3 month supply. Check the formulary list for Walmart, and other drug stores that offer the 3 month supply of certain drugs for a set price. You can also check Sam's and Costco as you can utilize their pharmacy benefits without having to be a member this also applies to their vision and hearing centers.

tmbrwolf329 said:

Encourage Foundation: Enbrel

Abbott Foundation Assistance Program: Humira

Johnson and Johnson Patient Assistance Program: Remicaide

Just to name a few that I've used. :)

Also..there is a place called RxOutreach.org that helps with other prescriptions, though I'm just signing up for it and am confused about their pricing policy for Methotrexate (looks like it won't save me more than about $13.00 every 3 months so I'm not sure I'll use this program for the MTX)

9

I understand that she might not fall into the category for medicaid but she should be offered a policy regardless if she pays out of pocket. If she was denied a policy for pay then there is a definite problem!



tntlamb said:

Some states (21 I believe) declined to pass the expanded medicaid program which was made optional in the supreme court case. For five years it was 100% funded declining to 90% funded after five years. Consequently there was a hole. The "subsidies" were/are simply a tax credit. The catch with that is you have to be working enough to qualify. There are a number of folks who do not qualify for medicaid for a number of reasons that don't earn enough for subsidies under AHC. These folks WOULD have been covered by the expanded medicaid program.

Now this may sound poilitical and I don't care, but in their rush to stop the whole program and failing at it the Conservative block made decisions at the state level to insure that those the most in need would be denied medical care. Of course guess who's being "blamed"

10

I'm so sorry you've had and have so much to deal with. I share your frustration with getting help especially with the medical community. I blame much of it myself on going undiagnosed for so long. I'm sure I wouldn't have had the trouble I have if it was diagnosed much sooner.

Don't stop your fight for your rights. If you get frustrated, just post here :) We are here to listen and help in any way we can. I'm sure someone will always have some helpful words for you. I can't imagine some of the health care frustrations you're having.

11

The price of MTX has increased exponentially in the last year. I used to pay about $10 for a month's supply, it is now between $71-$125 per month for the same number of pills (28 for me). MTX is not on Walmart's or Sam's club formulary, and there are no Costco's here where I live. I have called every pharmacy in a 25 mile radius from my house and the prices are all super high. Just last month I had a mom and pop pharmacy that sold me my MTX for $37/month, but their prices just went up to $73. Sad face! Now, that is not to say that the price will remain in the stratosphere forever, but for right now, MTX just went up out of my price range...

mamartin1014 said:

I could be wrong but I think you can get methotrexate for $10.00 for a 3 month supply. Check the formulary list for Walmart, and other drug stores that offer the 3 month supply of certain drugs for a set price. You can also check Sam's and Costco as you can utilize their pharmacy benefits without having to be a member this also applies to their vision and hearing centers.

tmbrwolf329 said:

Encourage Foundation: Enbrel

Abbott Foundation Assistance Program: Humira

Johnson and Johnson Patient Assistance Program: Remicaide

Just to name a few that I've used. :)

Also..there is a place called RxOutreach.org that helps with other prescriptions, though I'm just signing up for it and am confused about their pricing policy for Methotrexate (looks like it won't save me more than about $13.00 every 3 months so I'm not sure I'll use this program for the MTX)

12

Thanks so much ev1, and I am already a member of the RxOutreach. That is a great program. I pay $145 monthly, well, my mother pays, 145 a month for like 1000 dollars worth of meds. And I have been denied Obama Care through the Market Health Care Place. I was told I do not qualify. Anyway, I finally have found a light at the end of my tunnel. I started counseling yesterday. After fighting for it for 1 year, I finally found someone to help me. The other thing that has happened, however so small, I found a county program that is offering little coverage, but some. I am hoping this is a step in the right direction.

13

Yeah, why did MTX go up so much?! TO THE GOOGLE!

Ok, what I've found out is a few things.

1. The cost of the compounds to make it went up.

2. Some people are finding the inject-able cheaper than the oral.

3. Last february there was a shortage of the drug, but I don't see one at this time BUT that 'shortage' helped increase the prices.

To quote Forbes, "Clearly, free markets do not always work in health care and these deadly shortages certainly serve to prove the case. When pharmaceutical companies lose interest simply because the money is no longer as good as it once was—people die."

14

Ah, ok, they are denying you the free healthcare? You should still qualify for a for pay healthcare plan. This chart helps: https://www.healthcare.gov/how-can-i-save-money-on-marketplace-cove...

And this might help as well: https://www.healthcare.gov/whats-the-difference/
AngelMary said:

Thanks so much ev1, and I am already a member of the RxOutreach. That is a great program. I pay $145 monthly, well, my mother pays, 145 a month for like 1000 dollars worth of meds. And I have been denied Obama Care through the Market Health Care Place. I was told I do not qualify. Anyway, I finally have found a light at the end of my tunnel. I started counseling yesterday. After fighting for it for 1 year, I finally found someone to help me. The other thing that has happened, however so small, I found a county program that is offering little coverage, but some. I am hoping this is a step in the right direction.

15

Hi Mary, I'm so sorry for all your insurance problems. Have you tried calling the psoriasis foundation to see if they have any ideas on how to help? They are strong advocates for psoriasis and PsA care. Just a thought. Wishing you the best, Frances