Cost of Parkinson’s disease

Imagine living your life as if it was any other day. You’re functioning normally until suddenly; your foot begins to tremble. That can be the start of a whirlwind of problems. Fast forward a year and your quality of life has changed significantly. What started as a foot tremor has evolved into early-onset Parkinson’s disease. Not only are you hurting but your wallet is hurting as well. The cost of treatment for Parkinson’s disease and other neurodegenerative diseases is extremely high and healthcare companies do not cover large portions of the treatment and home care. This unfair to those suffering and health care companies should be more inclusive in their coverage.

Parkinson’s disease is a progressive nervous system disorder that affects movement.  Certain neurons in the brain gradually break down or die. Many of the symptoms are due to a loss of neurons that produce a chemical messenger dopamine. When dopamine levels decrease, it causes abnormal brain activity, leading to symptoms of Parkinson’s disease (Whetten et al. 1997). There are several factors that can play a role in the disease. Researchers have found specific genetic mutations that can cause Parkinson’s. Gene sequencing allows scientists to pinpoint the necessary alterations needed for the cell-cell communication to continue (Moore et al. 2006). Preliminary research is being conducted in order to screen for these sequences and potentially get ahead of the illness.

As of right now, there is no cure for Parkinson’s disease, but current treatment options are medications to help dramatically control its symptoms. Muscle rigidity, tremors, and dementia are all symptoms that result from the lack of cell communication (Moore et al. 2006). In some later cases, surgery may be advised. Physical therapy that is focused on balance and stretching can help with the muscle functioning (Moore et al. 2006). Gene therapy has been an experimental option for patients however the carriers for the dead signaling neurons must be developed. The quality of life that patients live is dependent on their access to the medications and treatment.

Nearly one million will be living with Parkinson’s disease in the U.S. by 2020, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease (Kowal et al. 2013). The prevalence of this neurodegenerative disease has increased within the last decade and so has the cost. The total cost of Parkinson’s disease to individuals, families and the United States government is $51.9 billion every year, with $25.4 billion attributable to direct medical costs (i.e., hospitalizations, medication) and $26.5 billion in non-medical costs like missed work, lost wages, early forced retirement and family caregiver time (Huse et al. 2005). Parkinson’s disease affects a person’s finances and their ability to participate in the labor market.

Next to hospitalization, drug treatment accounts for the highest expense for direct medical costs of Parkinson’s disease (Hampton et al. 2019). Private health insurance typically requires evidence of good health to qualify, and pre-existing conditions such as Parkinson’s disease are most often excluded. The Patient Protection and Affordable Care Act passed in 2010 and changed the rules for eligibility for health insurance plans. The Affordable Care Act ensures that individuals with pre-existing illnesses and conditions, like Parkinson’s, cannot be denied coverage (Kowal et al. 2013). Healthcare companies are still able to get around this rule. They began to qualify it as a “prolonged disability” and not an illness (Hampton, 2019). By those standards’ the companies have the option to either not accept the patient, or if accepted, withhold money that should be provided to pay for medical expenses.

When patients are not accepted by private healthcare companies, they join government assistance. Medicare is a federal program that provides health coverage if you are 65+ or under 65 and have a disability, no matter your income (Differences, 2019). Medicaid is a state and federal program that provides health coverage if you have a very low income (Differences, 2019). Most Parkinson’s patients will join Medicare for government assistance.

Medicare has four categories of coverage that are available. Medicare Part A  helps cover inpatient care in hospitals, including critical access hospitals, and skilled nursing facilities (The Parts, 2019). Medicare Part B helps cover doctors’ services and outpatient care. It also covers some other medical services that Part A doesn’t cover, such as some of the services of physical and occupational therapists, and some home health care. Part B helps pay for these covered services and supplies when they are medically necessary (The Parts, 2019). Some people pay a monthly premium for Part B but for Parkinson’s patients who no longer work funding premium is difficult. Medicare Part C is the Medicare Advantage Plan. The plan will provide both Part A and Part B coverage. Medicare Advantage Plans may offer extra coverage, such as vision, hearing, dental, and/or health and wellness programs (The Parts, 2019). Medicare Part D offers prescription drug coverage is available to everyone with Medicare (The Parts, 2019).

Medicare’s coverage of medical equipment and assistive technology for persons with Parkinson’s disease seems somewhat arbitrary.  Items such as wheelchairs and hospital beds are covered but stairlifts and walk-in tubs are not (Financial, 2016).  Yet all these items serve the same purpose of helping individuals overcome personal challenges and remain living in their homes. Generally speaking, if an item is considered medically necessary, Medicare Part B will cover the cost.  The gray area with Parkinson’s is that some technologies do not fall into the category of  “medically necessary” but are necessary to allow an individual to manage their activities of daily living. Equipment or devices must be for use in the patients’ homes (as opposed to in a nursing home).  If purchased from a Medicare-approved supplier, Medicare will pay for 80% of the allowable purchase price (Financial, 2016). Even if they can pay it there still needs to be approved for the patient to receive such item. Medicare will not pay for personal care at home, in assisted living, or in adult daycare.

The treatment and home care that is necessary for Parkinson’s patients is being substituted with a subpar excuse for assistance. The cost of Parkinson’s has increased and will continue to increase as new treatments and medications develop. Private healthcare companies want to exclude Parkinson’s patients, so they are able to save every dime.  The government assistance is a step up however patients have yet to receive the quality assistance they deserve. Parkinson’s is an important neurodegenerative disease and hopefully, in the near future circumstances change.

Sources

• “Differences between Medicare and Medicaid.” Medicare Interactive, Accessed November 18, 2019. www.medicareinteractive.org/get-answers/medicare-basics/medicare-coverage-overview/differences-between-medicare-and-medicaid.
• Dodel, R. C., Eggert, K. M., Singer, M. S., Eichhorn, T. E., Pogarell, O., & Oertel, W. H. (1998). Costs of drug treatment in Parkinson’s disease. Movement disorders: official journal of the Movement Disorder Society, 13(2), 249-254.
• “Financial Options for Parkinson’s Care & Assistive Needs.” Paying for Senior Care, May 2016, Accessed November 18, 2019. www.payingforseniorcare.com/parkinsons/financial-assistance.html#Medicare.
• Hampton, Matt, and Otto Lenhart. “The effect of the Affordable Care Act preexisting conditions provision on marriage.” Health economics 28.11 (2019): 1345-1355.
• Huse, D. M., Schulman, K., Orsini, L., Castelli‐Haley, J., Kennedy, S., & Lenhart, G. (2005). Burden of illness in Parkinson’s disease. Movement disorders: official journal of the Movement Disorder Society, 20(11), 1449-1454.
• Kowal, S. L., Dall, T. M., Chakrabarti, R., Storm, M. V., & Jain, A. (2013). The current and projected economic burden of Parkinson’s disease in the United States. Movement Disorders, 28(3), 311-318.
• Moore, Susan, and Simon Knowles. “Beliefs and knowledge about Parkinson’s disease.” E-Journal of Applied Psychology: Clinical and Social Issues 2.1 (2006): 15-21.
• “The Parts of Medicare (A, B, C, D).” Medicare Interactive, Accessed November 19, 2019. www.medicareinteractive.org/get-answers/medicare-basics/medicare-coverage-overview/original-medicare.
• Whetten‐Goldstein, K., Sloan, F., Kulas, E., Cutson, T., & Schenkman, M. (1997). The burden of Parkinson’s disease on society, family, and the individual. Journal of the American Geriatrics Society, 45(7), 844-849.

This entry is licensed under a Creative Commons CC0 1.0 Universal Public Domain Dedication license.