The MS Activism Foundation exists because of a series of events that occurred after a severe exacerbation of Paul’s Multiple Sclerosis that began in January of 2008.
The exacerbation, or MS Attack, was so severe and of such a long duration that Paul’s doctor’s feared for his life and recommended a risky chemotherapy treatment to decimate his immune system. (MS is an autoimmune disease).
The exacerbation required Paul to began short-term disability and take a leave of absence from work; and it was this action that revealed the disturbing inadequacies of our nation’s employment and insurance laws that purport to protect those that are disabled or suffering from long-term illnesses. In essence, the product that is group long term disability insurance is a fraudulent product.
In short, after six months of short term disability, his claim was automatically sent to the long term disability department at CIGNA, his insurance provider, and then immediately rejected by them, despite three (3) neurologists’ recommendations and his meeting all the requirements of his policy’s description of disability.
Their rejection included a number of falsified documents and references, unlawful application of disability criteria against his illness, and a complete rejection of his doctors’ notes, recommendations and even clinical tests, including MRI’s, (showing lesions on both his brain and spinal cord) CAT scans and Lumbar Punctures (spinal taps).
Upon appeal, Paul and his family were placed under surveillance at our home by his insurance provider, CIGNA, and were told by both provider and attorneys consulted that the entire appeals process could last from 6 months to 2 years, during which time the family would have absolutely no income. (At the time, Paul was the sole income provider for our family, which is precisely why he dutifully paid monthly premiums for his long-term disability insurance.)
As a result, Paul was forced to return to work at Fidelity Investments–against doctors’ orders–while also undergoing a six-month course of chemotherapy.
Just one (1) month after completion of his therapy, Paul’s employer pressured him to accept a severance that they claimed was necessary because “Paul had under performed in his job compared to his peers, in terms of sales, during the previous six months.” The previous six months, of course, were those in which Paul was undergoing weekly chemotherapy treatment. Despite this, he led his peer group in daily activity, and he had never before had a negative review during his tenure with this employer.
The good news is that Paul’s treatment, which only had a 25% chance of success, actually worked, and worked very well. Except for residual nerve damage (that is unfortunately disabling and painful) Paul is healthier than he has been in years (even before his diagnosis), and he has been attack-free for more than 2 years.
The sad news is that our experience shed an unflattering light on the serious legal, workplace and insurance regulations that have allegedly been established to protect families like ours and others suffering with long-term disabilities and illnesses. The revelation is that laws such as the ADA (Americans with Disabilities Act), and ERISA (Employee Retirement Income Security Act), HIPAA (Health Information Portability & Accountability ACT), and even parts of the new Affordable Care Act (which we support), are often inforcibly weak, riddled with loop holes and actually drafted more to protect the corporate interests at stake, rather than the individual at risk.
As a result, the MS Activism Foundation is dedicated to creating awareness and effecting positive change in the following areas: 1) Federal and State laws to ensure adequate and affordable health care for all, specifically, expanding Medicare for everyone (symbolically named, “Medicare Part E”); 2) Federal ERISA laws, specifically those regulating short- and long-term disability, which currently enable insurance providers to deny more than 95% of legitimate claims; 3) Employment discrimination against the disabled that remains wide-spread, highlighting the weakness of laws such as the Americans with Disabilities Act (ADA), and its inconsistent enforcement; 4) and the needs of MS patients and others with long-term, pre-existing conditions to acquire and maintain affordable and effective health care coverage.
At present, the primary mechanisms by which the MS Activism Foundation accomplishes its goals is through this website and our various outreach activities to allied non-profits, NGO’s, community leaders, government agencies, and politicians.
Anticipated programs include the ability to offer one-on-one case support to MS and similarly affected patients to help manage the challenges of job discrimination, find access to affordable insurance and provide information on established support programs in their area.
The MS Activism Foundation accepts donations from individuals, foundations and organizations. Donations go toward helping us maintain this site and support our policy and outreach programs. Please Donate. We appreciate your support.