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.
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!
all rights reserved by Maria De Leon