This past two months, as I struggled to get a new secondary insurance to cover my long list of medications as well as obtain a new plan for my family, I began to realize more and more that this country has completely lost sight of what’s important. Having been forced by “Obamacare” a.k.a. Affordable Care Act to give up our reliable insurances and go on Medicare or suffer the ridiculously exuberant prices of both having an insurance that does not cover anything because for a great majority of chronically ill patients the deductibles are upwards of 3,000 up to 10,000 which was the case for my family and I or get penalized for NOT having insurance, all the while not being able to “afford” neither the medications nor the doctor visits which ironically was the reason why such laws were instituted.
As I sat at my doctor’s office waiting for my appointment, long over due because insurance refused to pay my visits on account that they felt I should be on Medicare, I heard the complains from the patients in the waiting room, the staff, the nurses, and the doctors about how terribly broken the system has become. As I listened to the stories of medication denial, of exuberant prices even for generics which also require preauthorization along with numerous letters, forms, and phone calls from the nurse and doctor just to get a single medication or treatment approved, the poem “SEE ME” came to mind.
“What do you see…what do you see? What are you thinking when you look at me?-….I think of the years, all too few- gone too fast, And accept the stark fact that nothing can last. So, open your eyes, open and see.. look closer SEE ME!
So My Wish for this Christmas is not a cure but a change of heart… a true understanding of the needs of the chronically ill. Chronically ill patients like Parkinson’s individuals have limited resources due to the nature of the progressive illness – we already stress about finances and the future well being of our family and loved ones and having to add a burden of choosing to eat or take medications is not something we should have to do in this country or any country for that matter. What good is it to have new medications if the majority of patients can not afford? it serves no purpose to spend billions of dollars in research if no one is allowed to diagnose, treat, or implement care, I say this with the utmost respect. However, as someone who has done research, trained as a doctor and is a patient, I say the most important thing is quality of life and living a full life and you cannot do this without the aid of a doctor that is there to treat, knows how to treat and when to treat so that life can continue.
The problem in this society is that we do not value people. We undervalue the doctors, the skill and the time required to become experts and the time needed to care for a deeply complex disease such as PD. While I was in practice, it took me an average of 55 minutes to see a PD patient. the same is true for my MDS doctor. This means that you can only see about 10 patients a day in clinic and since most PD patients are on Medicare it means lower reimbursement especially since it has been dropping steadily each year since the Clinton administration. Now since Obamacare those in solo private practice in rural communities are struggling to stay afloat. That is worst for neurologists and PD specialists because we don’t do a lot of procedures which have high reimbursements therefore what practicing neurologists make in a day goes mostly to maintaining overhead -that is to say payment of staff which has escalated considerably due to all the red tape of having to deal with insurances. When you work primarily to pay your staff and office bills while incurring all of the liability is no wonder so few doctors stay in rural areas. this combined with already shortage of neurologists due to being a difficult field, the gap is going to continue to increase while the needs of PD patients will continue to go unmet unless the government along with the leaders of PAN and other Parkinson’s Foundations step in to better take care of its neurologists especially considering that the population is aging which means increase in PD along with other neurodegenerative illnesses.
I believe that it is within each one of our powers if we unite to make a difference and to bring about change. Parkinson’s patients SHOULD NOT have to continue to experience a great amount of dyskenesias or hospitalizations because they are not able to afford new treatments costing the government and society much more money in the long run than if they would set aside funds to care for patients even if it means decreasing funding research since we are not optimally using the medications and treatments we have at this point. Example- I have been on Azilect for almost five years through samples and done well. However now that I am on Medicare of course its not covered!!! The insurance wants me to try things that are not the same although they claim they are… so I asked my pharmacists how much it would cost for me to purchase without insurance and I almost fell backwards when I got a staggering $1,300 for a month supply so no wonder patients continue to deteriorate in the face of so many different types of drugs and continue to take primarily the old levodopa/carbidopa which alone and for extended periods of time will CAUSE adverse side effects simply because it is the ONLY affordable drug! Well I think it is time we unite and change this short sighted thinking and begin to look at the BIG picture and TRULY focus our vision on the PD community and SEE THEM with their dreams, ambitions, desires, aspirations, struggles and beating hearts full of Hope and Optimism for a better tomorrow…
This is my Christmas wish….
MERRY CHRISTMAS EVERYONE!!!!
(Please feel free to comment or remark on your experiences- I admonish everyone in the various states to send a letter to the directors /assistant directors of PAN of their respective states as to their experiences in obtaining care but especially medication-thank you-God Bless)