Since I was diagnosed a few months ago with Cushing's disease, a rare disorder caused by a pituitary adenoma (noncancerous tumor or nodule) at the base of my brain, I've been learning a lot about the pit(uitary)falls of our current health-coverage and health-care systems and the opportunities available to us to circumvent those pitfalls.
I want to tell you today about a Web site, NeedyMeds, that can help you find financial assistance programs specifically for prescription medications. And to urge you to accept sincere offers of love and care in order to help you obtain that financial assistance, because sometimes bureaucracy and paperwork are overwhelming -- and needlessly so if you have a team of helpers on your side.
I've been pretty darned sick the past few months due to a crashed immune system that's one of Cushing's hallmarks. You wouldn't believe the expressions of love and care of friends, family, coworkers, neighbors, and complete strangers who have extended their compassion to pitch in and get me through this. I'm so very blessed that it's hard for me to believe it myself. Thanks to everyone here who has provided books to read, audiobooks to listen to, cleaning services, advice, support, fruit and healthy yummies, tea, a beautiful quilt, yard work, help with doctor bills, a shoulder to cry on, and reasons to stop crying and get to work.
There is no smidgen of hyperbole in my limitless and unbound gratitude to you for keeping me going these past few months. There have been dark times, very dark indeed, but each person who's reached out to me has given me the light I've needed to see my way through.
There is light for others, too. If you're taking prescription medications that are causing you financial hardship, here's something that might help light the way out of that dark hole.
If you have a list of medications and need assistance in paying for some or all of them, visit NeedyMeds.com. NeedyMeds allows you to search alphabetically for generic and brand-name medications to find descriptions of assistance from each pharmaceutical firm that produces your medications, as well as links directly to the application forms for each.
Nearly all pharmaceutical firms have patient assistance programs, and most of these programs are based on percentage of federal poverty guidelines. Generally, people whose incomes are 200-300% above the federal poverty guidelines are eligible to apply, though some companies offer assistance that is not need-based at all. Many of them even assist patients who have insurance but need help with the co-pays.
Some programs offer a debit card with a certain fixed amount available, and others reimburse patients after we pay for our medications. (In my own experience, it can take between two and six weeks to receive reimbursement checks, so if you're taking particularly expensive medications, it's worthwhile to ask the company specifically about debit cards.)
The applications themselves are simple, but all require your prescribing physician to fill out part of the form, so plan for the time and effort it takes to get the forms properly completed.
If you're too ill to handle all of these forms yourself, please do ask a friend or family member if they'll contribute a couple hours to complete the forms and run them over to your doctor's office. Paperwork can be overwhelming, and when we're very ill, we need to learn to pace ourselves, take care not to over-exert, and to accept the love and care of the people around us who very sincerely want to help us get better.
On a Personal Note
Here's where I'm at in my own journey toward healing. Through a crazy quirk of fate that involves my second job at an arthouse cinema, some really compassionate film festival organizers, and a passel of Orthodox rabbis standing in a theater lobby, I have received a referral from the Ezra LeMarpeh Center to one of the world's most renowned neurosurgeons. Dr. Amazing World Renowned Neurosurgeon has referred me to equally renowned physicians and surgeons who deal with Cushing's patients on a daily basis (Cushing's disease is very rare indeed and it's difficult to find skilled experts who can help with the concatenation of problems it causes in the body):
- a neurologist to investigate intracranial pressure caused by an as-yet-unexplained leakage of cerebral spinal fluid, which might jeopardize postsurgical outcome if not addressed before surgery
- an otolaryngologist and speech pathologist to rule out neurological cause for spasmodic resonant dysphonia that has kept me without a voice since November (ARGH!)
- an endocrinologist to determine whether the pituitary tumor is primary (in which case Dr. Fukushima could remove the tumor soon) or secondary (in which case I'll need a bilateral adrenalectomy (BLA) to remove primary tumors/nodules in the adrenal glands)
I also am working with an infectious diseases specialist to control the viral/retroviral and bacterial infections that I've been battling the past few months.
It's all very complicated, but the Ezra LeMarpeh Center specializes in the rare, the complicated, and the mysterious. As soon as I get the immune system functioning and figure out whether that tiny little brain tumor is primary or secondary, I'll be set for surgery.
Thanks to all of you and my other friends/family/neighbors/compassionate community members and to these terrific physicians and surgeons, I'm back to work after six weeks off the job(s). Also, after a minor medical procedure and some amazing speech therapy, I've had a voice again for the past four days. (Knock wood and cross fingers it stays.)
Financially, I'm not in the best position in the world, but I'm definitely not in the worst position, either. The Ezra LeMarpeh Center agreed to pay for the brain surgery and (if needed) the BLA. I've received assistance with medication co-pays, and I also get free anti-HIV medications for the viral/retroviral problem. Going bankrupt is a worry, but it's a worry I have come to cope with. I believe with all my Wizard-of-Oz-ly heart, brain, and courage that things are going to be alright.
If you are struggling with your health, please know that help and comfort are available. Just reach out and you'll see.
If you have a friend or family member who's ill and you'd like to become a member of their healing team, offer a couple hours of your time to fill out paperwork, run some errands, or tackle another task that can help them stay strong enough to keep the fight going another day.
Sometimes the strength for one more day is all it takes to keep despair at bay long enough for hope to settle in and take root.