At $52B Per Year, Economic Burden of Parkinson’s in U.S. Double Previous Estimates, Study Reports

economic burden Parkinson's

The annual economic burden of Parkinson’s disease on U.S. patients, families, and the federal government is nearly $52 billion, more than double the previous estimates, according to a comprehensive study by the Michael J. Fox Foundation (MJFF).

This is the first study to examine the various ways Parkinson’s affects a patient’s finances and their ability to participate in the labor market, according to a press release. The report is touted as the most complete assessment to date of the disease’s economic toll.

The $51.9 billion includes some $25.4 billion that goes toward hospitalizations, medications, and other direct medical costs, and $26.5 billion in non-medical costs such as missed work, lost wages, early forced retirement, and family caregiver time.

Previously, the combined direct and indirect costs of Parkinson’s in the United States were estimated at $25 billion annually. For many years, according to the release, the disorder’s financial impact was vastly underestimated.

Called “The Economic Burden of Parkinson’s Disease,” the study was conducted with support from the Parkinson’s Foundation, American Parkinson Disease Association, The Parkinson Alliance, and several pharmaceutical companies.

“There are a lot of surprise costs when you have Parkinson’s,” said Steve DeWitte, a Parkinson’s research funding advocate. “Beyond the rising costs of medications and healthcare, my family has shouldered the financial burden of my having to leave the workforce 15 years earlier than I had planned. That means our income dropped by more than half, and we’ve had to figure out how to stretch our budget to cover the everyday household tasks I can no longer physically do.”

The study also found that the federal government spends nearly $25 billion each year on patient care. Of that, $2 billion is paid through social security, with the balance handled by Medicare. Roughly 90% of Parkinson’s patients receives Medicare benefits.

“This data will help facilitate a new level of outcome-driven conversations with members of Congress who oversee federal programs that affect the lives of the 1 million people with Parkinson’s in the United States,” said Todd Sherer, PhD, MJFF’s CEO. “Investing more in research toward better treatments and a cure will ultimately relieve the burden on already-strained programs like Medicare, Medicaid and Social Security.”

These findings underscore the prospective impact of policy or treatment interventions, he added. Advocates now have more specific data they can use to educate lawmakers and to urge them to prioritize biomedical research investment and to develop support initiatives.

To understand and examine the cost components of Parkinson’s disease, the researchers used data from Medicare, the Centers for Disease Control and Prevention, the U.S. Census Bureau, and other sources. Such data-driven knowledge is expected to go a long way toward raising funds for research to find therapies to ultimately ease the growing burden.

“These results provide deep insight into the indirect costs — those costs the people living with Parkinson’s and their families must shoulder alone,” said James Beck, PhD, the Parkinson’s Foundation’s senior vice president and chief scientific officer. “Knowing this information will allow us to better serve people with Parkinson’s and their families in the areas they’re most concerned about and where we can have the most impact.”

The MJFF is now examining how this study can help shape its research policy priorities, as well as future public policy efforts related to the economic burden of Parkinson’s. For one, it plans to develop a project model to assess how specific actions — such as a ban on chemicals associated with Parkinson’s or federal approval of a disease-modifying treatment — would affect the economic burden.

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Brain Disorders Remain Largely Untreated, European Study Reveals

brain disorders

The majority of patients — eight of 10 — diagnosed with a brain disease for which there are available therapies remain untreated, according to data from the Value of Treatment study of the European Brain Council (EBC).

That finding and more were shared and discussed recently at the 4th Congress of the European Academy of Neurology (EAN), June 16-19 in Lisbon, Portugal.

The social and economic burdens associated with brain diseases are about €800 billion, or $921 billion, a year in Europe, and steadily increasing, with estimates that one-third of all European citizens — 179 million people — are living with a brain disorder that includes neurological or psychiatric conditions.

“Healthcare and welfare systems are often inadequately organized and have trouble keeping up with the rapid pace of medical advances,” Wolfgang H. Oertel, PhD, University of Marburg, Germany and one of the session chair’s at the conference, said in a press release.

Moreover, failure to correctly diagnose a disease only adds to the costs and the patient’s personal burden, with wasted time and resources.

“Early recognition, starting treatment as soon as possible and preventive measures would serve to minimize the risks or may even in some instances slow the progression of the disease,” Oertel added.

The Value of Treatment study is the result of two years of research with patient-centred questions at its core: What are the barriers to optimal treatment?; What are the financial costs for guaranteeing brain disroders patients with quality medical and psychosocial care?

The study, undertaken by the European Brain Council — an organization composed of several European professional medical societies and patient associations for brain disorders — evaluated clinical data to assess the benefits of individual treatments for specific patient groups.

It included case studies of nine brain disorders (Parkinson’s disease, Alzheimer’s disease, epilepsy, headache, multiple sclerosis, normal pressure hydrocephalus, restless legs syndrome, schizophrenia and stroke) from several patients across Europe.

Researchers evaluated patients’ outcomes and financial burdens when treated with the best therapeutics available, compared to standard treatment or no treatment.

The results showed that early interventions with the best available treatment were most cost-effective for the long term.

“We clearly saw that an early start to treatment and optimal care costs the least over the long term. Non-treatment is the most expensive variant for diseases such as restless legs syndrome or multiple sclerosis and epilepsy, which affect people from a young age,” said professor Maura Pugliatti at the University of Ferrara, Italy, also a chair at the session discussing the Value of Treatment study.

The Value of Treatment study also identified specific healthcare interventions and where they often fall short of what they set out to achieve. Examples illustrated how patients need to receive close monitoring of care instead of acute treatment alone, and how insufficient social support can affect patients’ and their relatives.

In the Parkinson’s disease Working Group, the Value of Treatment study addressed treatment gaps and unmet needs of Parkinson’s patients, namely delayed or inadequate diagnosis, no adequate treatment, and non-adherence to treatment.

Several recommendations were gleaned from the study’s results:

  • Better information and active involvement of patients and caregivers can help identify the best possible treatment and result in better treatment-adherence;
  • Improved communication and coordination processes can help establish integrated and multi-disciplinary care systems;
  • Each patient should have access to the best possible treatment and therapy at each stage of the disease;
  • The public needs to be better informed about the complexity of Parkinson’s disease and patient needs;
  • More investment in research is required.

“The ongoing economic and financial crises have seen an overall deterioration in access to neurological care in some cities and rural areas due to cutbacks or the introduction of excesses payable by patients. It often takes too long to come up with the right diagnosis and initiate personalized therapies — if at all,” Oertel said.

Early detection and access to the best therapeutic strategies available ensures better health outcomes and lower treatment costs.

“Measurable health gains are linked to early intervention such as better survival rates, fewer complications, lower incidence of disability, improved quality of life and, ultimately, lower treatment costs — all of that would be possible!” Oertel said.

The Value of Treatment calls for “suitable treatment from the occurrence of the first fit onwards — by a suitably qualified specialist. And this is where there are major — yet surmountable — treatment gaps to be filled. We have a humanitarian duty to bridge them to the best of our ability when it comes to neurological conditions,” Oertel concluded.

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Source: Parkinson's News Today