Thanks BobJ, this info will hopefully prove helpful to those of us who suffer from CH's and have no health insurance.

Has anybody here found any of these sources of assistance for CH's?  If so, which source?

I just researched all these sites and either they don't have the injections only the pills which don't work for me or I don't qualify.   :'(  I emailed a few of them asking for assistance anyway or a idea of the right direction to go for this problem. I'll report back if I hear from any of them.  GG ;)

I also tried, with no luck for assistance :-[

I thought I would just say that I used RX outreach. They don't have the imitrex injections (so unfortunate) but will give a 3 month supply of sumatriptan tabs for $35.00. They also have our standards like verapamil & depakote. You have to be under a certain income level, but it's not too low & no assets are asked for. Application was easy. My doctor wrote me the script for 27 tablets & I sent the check. I'm waiting to see what they will send me. I hope they don't consider the 27 tabs as a 3 month supply though. I'll post again when I get the package.

Quote:

I hope they don't consider the 27 tabs as a 3 month supply though.

Most insurance companies I've encountered consider 9 tabs per month an entire month's supply. Which is why you should stockpile any abortives during the times when you don't need them.

Be careful stockpiling.  Back when I had insurance and a neuro, they put in my notes how many samples they had given me for stockpiling.  The insurance company took it upon themselves to decide that my CH was much worse than what my application stated.  Long story short, I am ineligible for health insurance and cannot afford a neuro)now due to CH, and they pulled back all claim dollars spent for my CH.  I felt that I was doing them and myself a favor using samples, and not claiming hundreds of dollars that trex cost.

I forgot to mention that I had to pay for the claims dollars the insurance company took back from the Provider. OK.  I'm done now.

Clusterfeck, I'm not sure I understand what you mean by "they pulled back all claim dollars spent for my CH".  Could you possibly clarify this?  Not following you at all.  And I do want to know, because I'm also stockpiling here.  Thanks.

Sorry I am 'off-topic" here, but I have to take a pause to reach out and say that (my experience with meds here) you guys (you know who you are) are the kindest, most generous bunch of people that I have never met....I will always remember the support I have had here :)

ANC My policy had been effect for about 2 years, and for some reason Humana decided to take a closer look at my insurance application.  My PCP and Neuro were keeping me in samples of injections, and they were the ones who recommended stock piling.  It was in my record as to how many samples they were giving me, and how frequently.  When Humana was doing their audit thing they determined that since I was getting so many samples I must have minimized the severity of the condition on my application.  They said that if they had known the severity 2 yrs ago, the never would issued the policy.End result was they excluded my coverage for CH retroactively 2 yrs, pulled back the claim dollars spent on CH from the docs, who then in turn my doc made me pay back the claim dollars that had been taken from them by Humana.  Big, ugly mess.  Did that help?  Now I am uninsured and ineligible for any private health coverage.  Automatic decline with my pre-x of CH.

~Jill

President Obama and the Affordable Care Act have done all CH sufferers one good turn, regardless of your politics and the flaws in the Act. No more denials for pre-existing conditions :)

But, and it is a big but, they can still charge us a ton and use high deductible and coinsurance dollars. If you don't have really good group coverage, you will still pay tens of thousands a year for treatment and meds. Hopefully that will change, too.

Thats right about the pre existing conditions. Every state is offering a "bridge plan" which I am using. I pay about 420.00 a month & all my doctor had to do was submit a letter stating that he has been treating me for cluster headaches for me to get the policy. All of my headache related meds & appts were covered right away. I don't know what will happen after 2014 though. I guess we'll see soon enough!  :)