Although, fortunately the new health reform bill was turned down last night we as patients still face the uncertainty of what the future healthcare system will bring reform will bring. Thus, we strive to have members of congress understand what it means to live with a chronic illness and deal with the financial burden it places not just on the patients and families. More importantly, society as a whole can suffer if there is no assistance for the growing number of people living longer with chronic illnesses like Parkinson’s and Alzheimer’s, and cancer to mention a few. As I give thanks to God for the miracle of modern medicine and His Grace which has brought healing to my best friend, I reflect on the issues of healthcare. And as she begins her slow recovery from recurrent metastatic stage 4 cancer which was wide spread, I ponder not only on the toll the illness has left on her body, her family, the relationships but also the enormous financial burden it has placed on them after 8 months of hospitalization, numerous bone marrow transplants, labs, testing and the slew of chemotherapeutic agents not counting the number of specialists and other ancillary staff.  The toll that the cost of medicines takes on a family or individual can be insurmountable. Unfortunately, this is also a place where few people ever come back or recover from. Not only is the sudden realization that our health is not under our control but the daunting reality of having to live a progressive illness as many of us like myself lose their livelihoods and ability to continue working can be far too overwhelming.

The grave reality is that financial factors play a major role in patient’s use of medications and subsequently sadly the patient’s outcome with a disease process. I have seen this first hand as a patient, doctor and caregiver. Sometimes, we don’t think about the financial issues at the onset of illness since our priority is to get well; but as the disease progresses and the time from diagnosis extends, this is the most critical factor in a person’s long term outcome for which many of us are ill prepared and as physicians don’t provide adequate guidance and support. I summit that low incomes and poor finances along with lack of access to medicines and treatments is the number one cause for patients and families demise and dissatisfaction with disease rather than the lack of treatments. I have heard time and time again from both patients and doctors the frustration in their voices in regards to lack of coverage of much needed medications. Unfortunately because always have to revert to the “cheaper” treatments the options become quite limited and not always offer the best outcome.

As I prepared another talk about the 200 years of Parkinson’s and the latest discovery and treatments options I was reminded by the people in the audience to whom I have addressed in past conferences. Most elderly, Medicare on fixed incomes who cannot afford the luxury of paying  high premiums for newer medications even if they do promise  to be more effective, with fewer side effects or prolong quality of life decrease disability and so on.

Looking at other patients with chronic illnesses, especially cancer patients are at risk of filing for bankruptcy due to severe financial burden but what is most interesting is that those who file for bankruptcy in context of chronic illness are at greater risk for having an early demise. Un fortunately, I have seen it firsthand particularly those who are young and don’t have the financial stability that an older person might have from years of productive labor hence are more likely to forego treatments or seek alternate remedies as in the Hispanic communities because of lack of monetary resources and lack of access to health care because of poor or no insurance coverage.  And even when the chronically Ill are over 65 and on Medicare, the restrictions placed by an outside third party who does not understand the intricacies of a complex illness such as Parkinson’s can tie the hands of the healthcare practitioners. Forcing patients to use less effective treatments or older treatments or asking doctor to find the cheapest medication which in the case of Parkinson’s is levodopa/ carbidopa. Although it still remains the gold standard, 50 years’ experience has shown us that this medication alone is fraught with side effects when used as a sole treatment option increasing likelihood of dyskinesia’s and subsequent decline in quality of life.

We cannot allow our chronically Ill to continue to undergo increased financial toxicity due to lack of government support. We must stand up and ask our representatives to continue to provide support for those who are chronically ill and not remove benefits for those with preexisting conditions and improve access to healthcare especially much needed drug treatments.

Some of the questions you might want to have early on with doctor when diagnosed with a chronic illness is referral to social worker, and to lawyers  experts in chronic diseases for financial planning including long term care for spouses or caregivers.

When discussing medications ask the price but also price benefit ratio. Don’t simply ask for a cheaper drug which might result in more adverse effects causing more hospitalizations and more doctors’ visits or side effects than a more expensive medication which in the long run would be more cost effective to keep you stable and also avoid the inherent confusion many have by having different generic brands for same medicine. (In my experience, the varying colors and shapes of same medicine gets patients confused by making them believe they are different especially in the elderly).  Ask if there is a less expensive treatment option that is equally effective.

Are there any nonprofit organizations or community organizations that can aid with burden of Drug cost. Also inquire what about any drug programs from companies – different companies have different philosophies in regard to helping patients.

But also important to note that many drugs used in neurology to treat many non-motor symptoms are off label but widely accepted among the community physicians to treat certain causes but with the new restrictions of Medicare. Previously employed medicines maybe denied leaving you stranded …I am in a quandary at this point with one of my meds. Discuss with your physician have them appeal if denied or find other appropriate alternatives. Don’t just suffer because insurance denied or medicine is expensive.

Here is a foundation where some of you might find assistance Patient Advocate Copay relief -1-866-512-3861. Also look at NORD. http://www.patientassistanceprograms.com

@ July 2017 All rights reserved Maria De Leon MD