As I have battled with Parkinson’s disease and my illness has gotten more complex so have my challenges in obtaining medication. I am sure I am not alone in this. Every time I go to the pharmacy as of late, the joy seems to be knocked right out of my soul for at least an hour. I have to brace myself and be in a sound state of mind to be able to navigate through all the hurdles a routine visit to the pharmacy can pose. It used to be that I could just call and have my prescriptions delivered to my office/home no questions asked. No let’s see if your insurance will allow it nor let’s see how many pills insurance will allot this time around. Each time, I step into the pharmacy, I wonder if the quantity be enough to cover my needs?
While I was practicing prior to Medicare part D (intended for patients to have better access to treatments they needed) patients had greater access to treatments even those that were costly in the form of subsidy programs, samples and other pharma assistance programs. However, with the advent of Medicare part D many of these programs disappeared, at least in my area, leaving patients high and dry without medications for months at a time. The reason being the soaring price of medicines which typically places a patient into a ‘donut hole’ (where insurance does not cover cost of medication). In some cases, this period can extend for months, as it does me. An estimated 17% are said to skip doses or stop treatment all together because of cost.
With the advent of the Affordable Care Act I found myself, like many others with chronic neurodegenerative illnesses, forced out of plans. As the number of medications began proliferating, due to my Parkinson’s diagnosis, I had to start allotting a good chunk of time just to visit the pharmacist (at times it is almost as lengthy as a doctor visit!).
All the while, as I stand there at the counter arguing yet again about the importance of getting my medicines on a timely basis, I see person after person of all ages and walks of life get the same comment…”Sorry, your insurance did not approve this prescription,” “you must get authorization from your physician first “or my favorite “if you want it costs such and such you have to pay…usually an exorbitant price and rarely for a full months prescription, which no one ever seems to be able to afford! The great majority of individuals have a sinking saddened look as they walk away from the counter without their much needed prescriptions others like myself may have a sudden rise in blood pressure causing severe head pain.
In the last several years’ retail prescription prices have increased six times faster than 1.5 % inflation. This is according to the new AARP Public Policy Institute (PPI) report. Even the prices of so called generic drugs has escalated to the point of being more expensive or as expensive as ‘brand name’ drugs, one such example is Rasagiline (Azilect) . The average annual prescription cost has reached new heights of over $11,000, which according to the experts is nearly 75% of the average annual Social Security benefits. This is madness!
If these trends continue people are simply going to stop taking medications which are no longer affordable increasing the taxpayer’s burden in the long run. This is because as I have experienced many times as a practicing physician as well as a patient when the appropriate medications are not given or taken routinely due to financial constraints there is a subsequent increase number of institutionalized in our case Parkinson’s patients due to worsening of symptoms including falls, strokes, hypertensive crisis, along with pain, aspiration pneumonia’s, and cognitive status changes. Other times, as I have recently experienced, when medications are altered to save insurances money, patients end up suffering needlessly and in the long run also end up costing not just insurances but inflict a monetary burden on patients as well. This is not even taking into account the time along with emotional distress caused on the entire family.
Placing a system of check and balance on the rising cost of medications is long overdue. Currently the rise in cost of medication is the fastest growing over any other health cost according to US News report of December 2017. To make things worse the drug cost in neurological illnesses like PD are disproportionately high. Medicare drug expenses for neurology has an annual spending of roughly 5 billion, the fourth highest in Medicare drug expenses. The hardest hit are those on Medicare and Medicaid due to Federal anti-kickback Statute, which prohibits pharmaceutical companies from offering shared assistance to beneficiaries of government subsidized health plans. With the majority of PD patients being on Medicare including younger patients due to medical disability this can be a great deterrent and challenge for many.
However, there are a few things we can do to ease our stress and burden in obtaining necessary medications:
- Be vocal- self advocate – let your needs be known to affect change. Talk to your lawmakers about the challenges and need for changes to health care to truly make affordable and accessible to all who live with PD. For me, this has been my biggest coping strategy. Although extremely time consuming at times for the most part it ensures I maintain a constant supply of medications.
- Team up with a clinical pharmacists, social workers and doctors to find the BEST treatments keeping in mind your personal financial situation. In my case having a clinical pharmacist through my insurance has been of little service. However, having my personal designated local pharmacist has been a great asset. Further, my biggest advocate and key team advisor has been my own MDS who advocates on my behalf continuously and provides me with the necessary medications and authorizations in a timely fashion. (She Rocks and I am extremely grateful for her). Some of the questions you should be asking yourself when discussing options with doctors, pharmacist, insurance etc. How many side effects, drug trials, and out of pocket cost am I willing to tolerate before I become proactive or vocal in demanding or asking for what I need? Do I have a choice and will I allow substitution of medications for a cheaper alternatives which may not be in same class as the ones I am taking. Can I pay extra to reduce or cut ‘donut hole’ altogether and are there supplement insurances or programs I can qualify for to aid in the cost of drugs?
- Consider generics only when available and appropriate keeping in mind there is a difference – but if you decide to stay with generics remember to keep same generic each time. Plus, if you get generic initially and do not get a positive response before discarding medication try a different generic or even brand ( highly recommend) to truly know whether it works or not. For instance, some drugs like Neurontin (gabapentin) do not work as well for tremors as brand name – this is years of experience treating patients with tremors.
- Use resources like national organizations to find assistance.
- Use additional resources like pharma assistance programs/NORD
Remember that the solution lies in all of us working together for better health.
Melville, Nancy. “Soaring Neurological Drug prices: How docs can help” (Feb. 17, 2019) Medscape Neurology
The facts about rising prescription drug cost. https://www.csrxp.org/…/2016/04/CSRxP_Facts-of-Rising-Rx-Prices.pdf
The high cost of rising drug prices. https://http://www.usnews.com/…/the-high-cost-of-rising-drug–prices
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