This is just a rant. I've left two of my drugs at the pharmacy this month. I needed to write about it because TELLING how I feel seems like the only action I have left. I'm doing everything I can do - my very best - to get as healthy as I can and locate a job where I can both afford my medications and get off of a few of them.
Just yesterday and today I have been denied for several forms of "Patient Assistance" from various companies. It makes me angry because I have paid most of my income either to insurance or to directly benefit for profit drug companies... AND they usually don't put their money into research but use research from gov't or universities then swoop in and market it and make profits from the public -- from suckers like me who actually need and use their drugs and have very little choice.
It is hard for me to decide which medications I'm on are truly medically necessary and which ones are frivolous. It is hard to keep going when I have $11 in my checking account and have spent - to date from January to today - over $7700 just on my copays and out of pocket money for drugs alone... I'm not including what I've spent on my doctors or hospital bills - or the bills from them which keep rolling in - and which I try to pay $5 or $10 for each month.
I don't know what to do right now. I find it ironic that one of the "Patient Assistance" I *was* given is for a drug that I truly don't need for staying alive, but which contributes to my quality of life. It helps me focus when I get dumb and dull from taking my anti-seizure meds. Meanwhile -- I was denied help for two expensive drugs which I truly need to stay alive. I have no idea why other than many other people need them and applied first.
(Ironically- when I visited my new neurologist in Ohio- she had never heard of either the quality of life medication or using such medications for that purpose. - It made me nervous about her because I need a neuro who understands me and who is willing to see with new eyes....) And -if I want to continue the medication, I will need to continue to see my expensive neuro in Atlanta -- whom I love, but also who seems to have a better feel for experimenting with drugs... and will seek alternatives until we get the right combination... For example, he will tell people to take baby aspirin, B complex and magnesium to help with migraines. It's pretty nifty. He seems not just to be a pharm whore, but to stay abreast of both current drug uses AND believe patients and other doctors when they tell him what works (even OTC or off label uses). He will not, however, arse himself to push for an insurance over ride - something I've seen with my rheum as well.
When insurance companies say no to a procedure or drug several of my doctors just accept it or tell the me to do something about it - like complain to the insurance or the job to change providors. THIS is problematic because DOCTORS also need to be a part of making a change in how insurance is crushing us all with their petty rules and for profit systems... We are truly all in this together. Patients, providers, to change the intersections of various for profit systems. [END THAT RANT]
Meanwhile -- I've got a week until I run out of two of my "necessary" meds. I'm trying to decide what to do -- either find a different generic or switch meds or decide how much I NEED some of my meds. I've tried one of my anti-seizures in generic twice and both times I had break through seizures... I'm wondering if I should just switch all together to a different medication. When we tried upping the dose to a higher type I had kidney issues... It was this preposterous annoyance.
I hate begging my insurance to understand. I hate paying out of pocket HUNDREDS of dollars to avoid having seizures. And then I hate not having enough money for the rest of my medication.
SOME people have said, "Do you qualify for medicaid?" Or, "Maybe you can get charity help." They say it so innocently. And I truly appreciate them and their suggestions. Meanwhile - I worked my entire life. Over the years I have made too much, even as a student, to qualify for such help. Most government agencies do not look at the finer issues, such as how much patients SPEND on their healthcare. They look at concrete numbers, such as how much a patient has EARNED. Even though, one year I was less than a hundred dollars above poverty level, they did not care. They simply said, "You can always go to a food shelter. To which I relied, I do not NEED FOOD, I need to purchase my prescriptions and pay my doctors and hospital bills.
[INSERT IDEA - PROBABLY NOT THE BEST - BUT BUT I'M ON CAFFEINE AND I'M FEELING LIKE SHIT AND NOTHING ELSE WORKS AND BECAUSE IN MY HEART I'M A SOCIOLOGIST WHO DREAMS IN IDEALISM AND LIVES AND WORKS IN THE REALITY OF AINT NEVER GONNA HAPPEN IN THIS COUNTRY]
Maybe instead of charities and begging it would be nice if people who have worked their entire lives could just afford medication. What would happen if we had insurance that was not for profit? What would happen if medications that worked and were well understood (medicine is, afterall an art, and patients are not fill in the blank categories, but are made up by both their medical and their social needs), were used in an equitable manner in a system where people were not valued on their economic contribution but because they were human? What would happen if people contributed a percentage towards their healthcare and education based on this belief of deserving humanity rather than on a profit system. And what would happen if people could pay themselves - like a mother or father could either stay home with their children or hire a nanny or daycare provider based on this belief? And so this "tax" could be a paycheck directly paid to themselves OR used to hire care for their children and when their children were old enough used to pay for school.
Similar notions for healthcare. People could pay themselves for care - or they could pay a doctor and hospital... Rather than think of it as a 30 or 40% tax- this is simply paying oneself for care. Everyone is paying an equal percentage of what they make.
Rather than a "poverty level" what would happen if we had a true living wage? What would happen if people lived according to what it truly takes to live and care for ourselves. What would happen if the most highly paid person in any corporation or institution made within 6-7 times the lowest paid person? What would happen if we didn't have as many "ghettos" or housing sratified by wealth and separation - but just different living areas connected perhaps to culture, but not to poverty or extreme wealth? What would happen if we valued people not on their economic status, but on their willingness to work? And when people were unable to work due to illness or age or limitation, we made space for other forms of productivity and contribution? What if we reconsidered what work is - and made former kinds of "unpaid labor" a valuable and possibly compensated kind of work. (ie- instead of social security or house wife- what if it were just another way to be paid?)
What would happen if state universities became free to students who agreed to a period of service (with pay-but more in line with an internship) according to regional need to pay back the cost of the education? This would reduce the hardship of repaying student loans for anyone who chose a public education. People who desired a private education could do so with or without loans as they wished. There are many regional and high needs and underserved populations (such as medical centers, hospitals, psychiatric units, schools) where people with free state educations of various degrees could serve.
What would happen if the infrastructure of our current system were reconfigured not only to truly serve our people, but to care for the future generations and environment? This was my rant. I'm huffy because I had to leave medication at my pharmacy.