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Why We Need Advocacy

“It’s probably the last major disease that we don’t know anything about.” ~Dr. Ron Davis, Director of the Stanford Genome Technology Center at Stanford University.

Every patient population needs advocates. Chronically ill patients need assistance with material needs, legal help with disability and insurance claims, and support when they visit physicians. Patients also need national agencies, such as the NIH and FDA, to sponsor research into treatments, and discover the underlying mechanisms and causes of their illnesses. Pharmaceuticals must be developed, alternative treatments explored, and a cure found. All of these efforts require advocates – people who will step forward and further the interests of patients, as well as protecting their rights.

AN UNDERFUNDED DISEASE

ME/CFS is often described as a disease that has “no known cause and no known cure.” The lack of known cause and cure can be directly attributed to the fact that over the past 30 years, very little has been invested in research.

Historically, ME/CFS has been underfunded, and, in some years, not funded at all. In 2012 through 2015, funding for ME/CFS was a scant $5 million per year, or roughly $5 per patient. Five million dollars may seem like a great deal of money, but a single large-scale study can cost that much or more.

In each of those same years, the federal government spent over $100 million─roughly 25 times more than it did on ME/CFS–on multiple sclerosis, a similar disease that has fewer than half the number of patients.

Advocates have called for an increase in spending commensurate with the burden of the disease. That is, funding must take into consideration the severity of the illness, the burden on both the patient and society in lost revenues, and the number of patients affected. If the NIH were to fund research into ME/CFS at the same level as it funds MS, research funding would amount to roughly $250 million.

Over the years, advocates have put sustained pressure on the federal government to increase research spending. In 2011, advocate Courtney Miller approached President Obama directly during a Town Hall meeting and asked if he would increase funding for ME/CFS. President Obama replied, “I promise I will have the National Institutes of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment.” The President made good on his promise, and in 2015 the director of the NIH, Frances Collins, pledged a substantial increase in spending.

LEGAL RIGHTS

Disabled Americans have a number of legal rights. The Americans with Disability Act ensures accommodations at the workplace, in schools, and in public areas. Social Security Disability Insurance (SSDI) grants access to disability benefits for those who have worked in the social security system. And long-term disability through private employers is covered by the Employee Retirement Income Security Act  (ERISA) through the Department of Labor.

Although there are numerous safeguards in place, it is often difficult to enforce laws meant to protect disabled citizens. Long-term disability benefits, in particular, have often been denied to ME/CFS patients by insurance companies that fall back on “no known cause or cure” and rely on obstructionist tactics to indefinitely delay benefits.

In 2016, The Department of Labor proposed new rules to the Employee Retirement Income Security Act  (ERISA), a law which governs long term disability (LTD) policies. These new rules would require fair review, prohibit conflicts of interest between employers and insurance companies, improve disclosure to claimants, give claimants the right to review new evidence presented by employers during the appeals process, and allow claimants to proceed straight to court without jumping through legal hoops.

ME/CFS advocates acted as watch dogs, publicizing the open comments period for the new rules, as well as submitting comments on behalf of disabled patients. All of these comments became part of the public record, and were taken into consideration by the Department of Labor.

WHEN YOU NEED SUPPORT

Advocates are best known for their efforts on the national stage, but there are many forms of advocacy that are needed at a personal level. Assistance is always needed when people are suddenly faced with a long-term illness. Along with the loss of health, there may be a loss of livelihood and a loss of income.

People who have never been faced with the changes brought about by a long-term illness may be unfamiliar with their new terrain. They may be unaware of local, state, or federal support available to those who are disabled. Patients may also need help navigating the waters of the health care system.

On an individual level, advocates are needed to:

  • Make sure schools comply with the Americans with Disabilities Act to provide accommodations for your ill child
  • Help working patients to secure accommodations in the workplace
  • Assist patients with disability and insurance applications
  • Investigate sources of material support when funds are low
  • Support patients in dealings with doctors and clinicians

References

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). NIH categorical spending.

White House Responds to ME/CFS Advocate. Courtney Miller confronts President Obama.

Employee Retirement Income Security Act (ERISA).

MEadvocacy Submits Comment to DOL.