Hello, all! I haven't posted here in a while, and that's for a very simple reason: I don't really like talking about the difficulties I have with my arthritis. Writing about the struggles with my illness can leave me feeling a bit weak, exposed. Thing is, arthritis has been a part of me and my life for so long that discussing it as an issue or a challenge can feel a bit like leaving the bathroom door open--it's just very personal. And I don't want people to see me as "Oh, poor Heidi; she has arthritis." I want them to see me for my accomplishments, exclusive of this disease.
However, I do believe strongly in the power of the blogosphere, and my inbox has become full of enough of you kind folks responding to what I've written here and asking more questions that I've realized that there is a big need for personal information out there.
And of course, this is where I say that I'm not a doctor and that everyone's experiences with Humira vary. It's been a wonder-drug for me, yes, but that doesn't mean that you will respond to it in the same way. I love it and don't have many side effects, but check with your doctor.
In answer to a few questions/tips I've learned along the way:
- If your Humira is damaged at any time (left out at room temperature, etc.) and your health insurance doesn't offer a program to cover damaged medicines, Abbott will replace your damaged Humira dose for free. Just call 1-800-4HUMIRA and tell them exactly what happened. (They've saved me twice now--once when the Humira was damaged during shipping and once when I suffered an overnight power outage.) Hurrah for corporate responsibility!
- Humira now comes in a pen. Advantages: you won't accidentally put the needle in too deeply and the dose goes by faster. Disadvantages: you can't control the speed of the dose, and it still hurts like hell.
- Healthwell Foundation is underfunded and very slow. They are great folks, but you will have to call them a minimum of five times and fax any relevant information three to six times before waiting six months for an answer or reimbursement. Don't get mad; it's just how they are. (I just faxed my reimbursement forms to them for the sixth time--no reason why they only reimbursed for two doses, not all four, even though they did confirm receiving all pages of the last five faxes I sent over the last six months.)
- Healthwell has a form for upping your grant amount. Last year's grant ($1,400) only covered about six months of my medicine, so I found out (completely by chance; they won't tell you) that there is a form to request a higher amount the following year as well as forms for requesting reimbursement for medicine that wasn't covered when the previous year's grant ran out. Yes, it's paperwork. Yes, it's slow. Yes, you'll have to call and fax repeatedly before getting your grant or reimbursement. But really, with the current administration, we're damn lucky they have any funding at all. And they are giving us free money, so again, patience and persistence is the way to go.
Hope this helps. As I find out more about how to deal with Healthwell and Humira, I'll keep posting my experiences. Also, if I may whine/rant for a minute--StupidCare (UniCare), after 18 months of my taking Humira, now requires a pre-authorization form (not sure what the prefix "pre" means here, since I've been taking it for 18 months, but whatever) or PAB in order for me to take the medicine. Not sure why or why they haven't noticed that they've been paying for the med for 18 months, but I'll let you know as the paperwork develops.
I actually think the best solution here is a better job with better health insurance--I'll let you know how that quest develops as well!