Need for Ongoing Affordable Access to Medical Care : by Maria De León

Comments 2 Standard

I am a physician with many friends and colleagues still attempting to practice medicine throughout the country. It is particularly difficult for those who have chosen to remain in rural areas like the one I live in.  Due to the current hostile changes that have taken place in recent years, many physicians have been forced to move to the city to join academia.  Subsequently, we the patients are the ones bearing the brunt of the cuts and loss of specialist in many areas throughout the country.  With these changes patients are now forced to travel farther many miles to find a especially a specialist which believe me is not an easy feat to do as the disease progresses and also as our capacity to drive diminishes.

Moreover, those physicians who are truly committed to patient care and remain not just in the field but in areas where there is a need quickly find themselves overwhelmed, frustrates, on the verge of a burnout. Why ? I believe this one of the few professions in which the expert does not only lack autonomy but has to constantly fight with everyone to be able to do what he/she was trained to do and what he/ she deems best for the patient. No wonder 42% of all doctors are facing burnout and symptoms of depression, to make matters worst nearly 1/2 of those physicians are neurologists! With the increase in Parkinson’s disease, Alzheimer’s dementia, and stroke in the aging population, we simply cannot afford to lose any more specialists.

Not only do we need to continue encouraging the US Congress to increase funding for research to halt these diseases but also provide adequate compensation for physicians managing these extremely complex entities, as well as provide funding and make necessary changes to the laws so that we can have tele-neurology availability  independent of where the patient or provider lives in the country. This form of care is essential for those that are too sick to travel, unable to drive, or have no other means of seeing a specialist because non exists within their state. The need for tele-neurology/telemedicine has become more pressing than ever before as we have seen this past year as several major catastrophe natural disasters have left many people stranded and afraid and without their much needed medications and access to medical care. thus, increasing morbidity and mortality in the chronically ill.

Another way we can decrease the stress level in our specialist and healthcare providers is getting rid of unnecessary red tape/bureaucracy. One example of this is allowing doctors autonomy to manage their patients medications as they see fit. Nothing creates more work and frustration,  for both patient and doctor than having to waste valuable time in getting pre-authorization and pre-approval of medications which have not been altered in years due to patients stability. of course if i went much longer without medication, I would no longer be stable ! This happened last week when ice storm hit 1/2 of country. Subsequently many offices including doctors and insurance companies were closed for days.

Meanwhile patients like me who desperately need their medications to continue functioning could not get a refill or even purchase a few til doctors were able to be contacted because price of each pill was nearly $100 ($3,000 for month supply- who can afford this?). It took me 5 days to get my medication and that’s only because I am a physician who could talk to her friend and to insurance  review committee without having to wait for medical records and could sit for hours on phone waiting to speak to someone otherwise it would have taken much longer given the circumstances. Many times, however, people that are sick neither have the savvyness to know who to call or dispute claim and/ or they lack the time, and energy required to carry out such feats. All I could think was that many people (such as doctor, pharmacist) were wasting valuable resources on me  trying to get a medicine i have been on for a decade when there are people out there who truly needed help because they were having problems and physicians offices closed, etc. walking thehalls

Sadly, as the problems and complexities increase in the field of  neurosciences/ and incidence of progressiveness diseases like PD augment, doctors and patients will continue to be stretched to their limits until someone breaks from pure physical and emotional exhaustion. Thus, I encourage everyone once again to contact their Congressional Representatives to help improve not only our quality of life by funding research ( which will not only help patients but also  provide salaries for clinicians who are doing research), the Raise Act (passed recently to help caregivers with financial burden), and telemedicine. Without your voice demanding  healthcare changes, there can be no hope for patients with chronic neurological illnesses to live better, healthier lives while maintaining access to their own specialists.

Join in me in March In DC as we (MJFOX public policy forum 2018) make our way to Capitol Hill to advocate for these salient issues. See you there!

Sources:

https://www.medscape.com/slideshow/2018-lifestyle-burnout-depression-6009235

copyright@2018

all rights reserved by Maria De Leon

Capitol Hill Preparation: By Maria de Leon

Comments 2 Standard

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.

 

Image may contain: 3 people, people smiling, people standing

 

copyright-2017

all rights reserved – Maria De Leon MD