Capitol Hill Preparation: By Maria de Leon

I feel very blessed to be part of a greatly empowered group of individuals from all around the country, brought together by the generosity  and  leadership of MjFox foundation. We all came collectively to D.C. committed to advancing the cause of Parkinson’s disease which affects nearly 2 million people nationally.  Myself and others are thrilled to speak to congress to ensure a better future for our families and for all those of us who live with PD. We are all advocating for a chance to have the best quality of life possible and to remain productive members of society.

I, personally, have been extremely lucky to have started treatment early in my disease by way of my profession and have access to excellent physicians and colleagues who have helped me remain active for the past decade despite my illness. However many in our communities have not been as fortunate to have access to healthcare, physicians /MDS (since many states lack neurologists), or even be able to afford the latest and newest medications and treatments available making living with PD that much more difficult. Hence, I along with others have descended upon Capitol Hill to make our voices heard on behalf of those who are unable to stand with us physically and the thousands of patients in each of our communities back home.

The goal of our visit is encourage increase funding ($36.6 billion) to the NIH to help biomedical research in all neurological areas but mainly in Parkinson’s disease. We are fast losing ground as a leading medical research country with China fast on our heels; if we don’t secure these funds not only will we lose our status but more importantly human lives will be at stake with loss of employments (we have the brightest minds in the neurological sciences and without money will be forced to move on to something else) and loss of quality of living . This money also helps fund our neurologists/MDS in training without it we will face and even greater shortage. We also know that the more minds working on an issue can potentially increase our odds of arriving to better treatments and a possible cure of any given illness i.e. PD.

Secondly, we are requesting allocating $5 billion to CDC to help put the surveillance act in effect. although bill was passed to start a registry of who and where PD is most prevalent it has not been instituted formally due to lack of funding. if we are to make ways in understanding the causes of Parkinson’s in various subpopulations such as young vs. old or understanding the significance of PD pockets as the one that exists in my neck of the woods in EAST Texas a.k.a. ‘East Texas PD belt.’  Without a national registry we can only estimate the number of people affected, which most of us believe is grossly underrepresented, thus we cannot begin to address the needs of the PD community in its entirety and allocate appropriate resources if we don’t know who and where these people are. Plus, we already know and estimate that the number of PD is on the rise and expected to double by year 2040, so chances are everyone will know someone affected by this illness at some point in their lives and may even have to be a caretaker or a patient themselves.  The DoD (department of defense) also needs money to evaluate PD in military with an increasing number of its soldiers returning with Parkinson’s and Parkinson’s like diseases after serving overseas. 

Thirdly, we also want to encourage health care reform that will continue to put the needs of patients first allowing them access to care (this includes physicians and other treatment modalities), to therapies (e.g. PT, OT, and ST) without caps. more importantly, to due away with the donut hole since 80% of PD patients are Medicare recipients on a fixed income and don’t have $8000 in the bank to cover medical expenses like drug therapies. As I have said many times, I firmly believe that patients could do so much better and have greater quality of life if doctors were able to treat their patients without restrictions from the government and allow us as doctors to choose the best treatments available and deemed necessary not what the insurances or government allow.  Having affordable access to the newest treatments would allow millions of people like me to continue the work we do and even continue to have jobs without burdening the system keeping us out of Medicare and institutions.

Finally, the thing to remember is that we patients don’t exist in a vacuum. We could not make it through our days without the help and support of our spouses, families, loved ones and our team of physicians and other healthcare providers. Some have suggested that for every PD person afflicted with this disease 7 other people are affected by it including the immediate family. Thus, fourthly, we would like to support the Raise Act (recognize, assist, include support and engage family caregivers act). Being a full time caregiver puts people who are caregivers at financial disability because they are forced to leave the work force early. this is especially devastating since the majority of caregivers are women who already are at a financial disadvantage compared to men when they stop working not only is their income diminished  but the lose number of credits / earnings eligible for social security upon age of retirement.  since women usually live longer then the burden on society increases. (40 million caregivers who provide 470 billion dollars of unpaid care. 1/4 are millenniums )- thus by supporting this act and making it law we can provide assistance to those of us who have diminished the cost of the government by giving of our time and resources to care for the chronically ill (i.e. PD). this especially important because often times the caregivers themselves (especially as we get older) can also be affected by illness as well.

If you could not join us at the forum this year, you can still do your part by contacting your State Senators and Representatives from your district and ask for the above issues to be considered when voting. Ask your representatives to join the Parkinson’s caucus if not already part of it.

thank you for allowing me to be a representative ….. and let’s bring the  21st century cure act to fruition!  this acts promotes and funds the acceleration of research into preventing and curing serious illnesses.

thank you also for Parkinson’s foundation, Parkinson’s alliance support, and Parkinson’s unity walk.

 

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My Experince with the Evolution of Retail Prescriptions:By Maria De Leon

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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. Used to be that I could just call and have my prescriptions delivered to my office no questions asked. Then as the number of medications began proliferating due to my Parkinson’s diagnosis I had to start doing drive through. First, no problem would request pick up and a handful of bottles would be given to me at a reasonable price. Then came the next stage…”please move to next window,” wherein I would sit there patiently each time longer and longer as the pharmacist would have to argue with insurance about coverage with an ever increasing escalation of price and a decrease number of pills given. This eventually led me to having to park and go into the pharmacy to discuss alternative options. Then came the inevitable forced changed by new Obamacare to get Medicare. Although, I had perfectly good insurance which although expensive it allowed me to get my medications without much hassle other than increasing yearly out of pocket cost. But suddenly because of my diagnosis, I was told to be “fortunate” to qualify for Medicare so my other insurance simply refused to cover expenses because under new law I WAS eligible for this so called wonderful privilege of having Medicare! After two months of trying to get the RIGHT Medicare coverage, I obtained the one government assigned to me NOT one I chose because I had too many illnesses. Was this new law not supposed to give insurance to all people independent of health status?

Well, I got insurance. I guess they forgot to qualify as to what sort of coverage people like me with chronic illnesses in reality will obtain!

Now, no longer can I get the medications I want, when I need but is a monthly battle of wits between me, the pharmacist and the insurance company taking a couple of hours at times just to get my meds and sometimes even after this length of time even with letters from the insurance company stating I have approval of medications in hand the insurance company refuses to honor this contract leaving me with two choices due without medicine or pay upwards of $300 per prescription.  All the while, as I sit there I see person after person of all ages and walks of life get the same comment…” Sorry, your insurance did not approve this prescription” or “you must get authorization from your physician first,” as if physicians sole job was to spend all day filling out the hundreds of Forms requested on a daily basis by their patient clientele. No wonder doctors are currently experiencing more burn out and frustration and disappointment in their career choices than ever before. They have no time to treat patients or to practice their calling because filling out mundane useless paperwork. web_banner_2_300x250

Each time invariably they will say how desperately they need their medication for management of current illness requesting retail price without insurance and the great majority have a sinking saddened look as they walk away without their much needed prescriptions. This is because 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 in some cases being more expensive than brand name drugs. 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.

If these trends continue people are simply going to stop medications which are no longer affordable increasing the taxpayers burden of having to not only pay for the extra cost of medications; but also for an increase number of institutionalized people with chronic disabilities like Parkinson’s disease and other neurologically progressive illnesses such as stokes, and Alzheimer’s which will invariably result as their disease progresses due to absence of adequate treatment. As it is now, my opinion and that of many of my colleagues is that many Parkinson’s patients are not well controlled and suffer unnecessary side effects and disabilities due to the contra into in treatment options dictated by each individual insurance plus the increased limited availability of samples or assisted drug programs for patients to qualify under.  For instance although there are no generic alternatives to Azilect many insurances insist of altering doctors recommendations of use of this medication for an older drug Edepryl which has a generic form known as Selegeline HCl. Although both are in same class, they are altogether different in composition. Azilect is much better tolerated and effective MAO-B inhibitor while the former acts as an inhibitor to both A & B.  Another  example for which I believe so many patients suffer from dyskinesias is the persistent use of older traditional levodopa/carbidopa compounds in lieu of newer intermediate release formulations which are shorter acting and have more side effects than newer compounds in my experience. pdftulip

These newer formulations like Rytary are upwards of $ 500 a month no one can take this at these rates especially if they have to take another 10 medications half of which are almost s expensive so they opt for cheaper drugs with higher side effects decreasing their quality of life in the long run. And since we can’t even rely on cheaper generic drugs to offset  the cost of brand name medications and specialty drugs we are threading very dangerous waters leading to serious implications not just for us with chronic diseases like PD but for the entire health care system which will inevitably implode on itself at this rate unless we do something.  As I said many times, we must lobby for our rights to have access to the medications that our physicians feel are necessary for us to have a true quality of life  and not what our insurances or government think is best for us! Lest we become a nation over run with vexation and cost in attempting to care for an increasingly growing elderly population with increased  neurological diseases like PD. Take action and start demanding change today by writing to your state and national congressmen and letting PAN  (Parkinson’s a ion Network) / MJFOX  what the real concern is for it makes no difference if we have a hundred new PD compounds no one can afford except the extremely wealthy.

So, I take my daily Rytary samples with a great deal of gratitude and introspection since it is affording me to feel like myself again after 10 years of battling with this disease. but as I do I am wondering how long I will have to continue feeling like ‘me’ because when samples dry up no longer will I be able to afford to take this expensive drug. I will continue to pray for change in the system for all who have the right to access to medications that allow them to be themselves once more. In the meantime, I will also continue to make use of my time, efforts and  productivity to advance Parkinson’s awareness, fight for better treatments along with a cure with equal affordable access of these treatments for all who currently live with PD.

Together we can #EndParkinsons