This letter was emailed to Illinois Senators Durbin and Kirk, and Representative Duckworth over the weekend. Neither Senator received the email, though it appears Rep. Duckworth did. Hard copies are going to the these individuals today in the hope that someone in a position of power will help those of us afflicted with chronic conditions, including multiple sclerosis, ALS, Lupus, and many others.
The Honorable Richard Durbin
United States Senate
711 Hart Senate Bldg.
Washington, DC 20510
The Honorable Mark Kirk
United States Senate
524 Hart Senate Office Building
Washington DC, 20510
The Honorable Tammy Duckworth
United States Representative
1701 E. Woodfield Rd., Suite 900
Schaumburg, IL 60173
Sirs and Madam:
Sometimes it is difficult to see real-world problems from different viewpoints and circumstances. If you would indulge me for a moment, I’d like to tell you about my circumstances that affect many others in similar situations.
I live in Schaumburg, Illinois. I grew up in Oak Park, Illinois, attended St. Giles grade school and Oak Park River Forest High School. My alma mater include College of DuPage and DePaul University. I graduated with 4.0/4.0, and 3.9/4.0, respectively. Growing up, our family of 4 (sister included) was an upper middle class family with many advantages: private primary school, nice house, travel, and numerous cultural events. Both parents are PhDs and my father is a retired university professor and WW II veteran (Army, Pacific Theater). My parents, even at advanced ages, are active and doing well.
I am not. I was unfortunately diagnosed with Multiple Sclerosis in 1991. I was 23. Though still ambulatory, most of my walking is brief and with a cane. I have little control over bowel and bladder functions as well as many other typical M.S. symptoms. I am male and 46.
The last few years have been very difficult: I’ve been laid off twice (4 times total in my life) and unable to work a full-time job in recent years because of M.S. Further, though I’ve had health insurance, I have paid over $34,000 out of pocket just for medical expenses the past two years. Last year I made only $26,400 (from Long-Term Disability) – the majority paid for medical expenses. I’ve had to raid my retirement plans (another $10,000 requested today on top of $25,000 in 2013) and over the weekend I sold much of my AT&T stock (from my days as an employee). My furniture is either second hand (Craigslist) or ready-to-assemble furniture from IKEA.
Last month I lost my long-term disability plan, carried by The Hartford insurance (adjuster Natalie Bourne), despite my neurologist’s instructions to file for social security disability. I did so immediately of course (with attorney Jeff Rabin), and my claim is somewhere in process (aka limbo). The Hartford claims I am able to work full-time, despite my neurologist’s (Dr. Daniel Wynn) assertion to the contrary. Thus far in 2014, I have earned $600.00. An attorney (Mark DeBofsky) advised me that The Hartford may be in violation of ERISA but said his costs were more than I would recognize in return. I am very fortunate to have these fine attorneys on my side.
I also signed up for an Affordable Care Plan in December of 2012 and received a partially subsidized plan with Blue Cross and Blue Shield of Illinois. I have since learned that BC/BS will not cover two prescriptions at all and the cost of my catheter supplies has escalated to $900.00 for 90 kits or 4 to 6 weeks supply. I have zero income, except for a few dollars from published eBooks. I have yet to fill my two most expensive prescriptions and have no idea if BC/BS will cover them at all. I was advised not to earn more than $800.00 per month at the risk of losing any chance at SSDI. My mortgage payment is $825.00 on a very modest townhouse/rowhouse.
I was compelled to drop out of my master’s degree program at the University of Wisconsin, Platteville. This is a shame; I am three classes short of a master’s degree in Project Management. Following a lay-off in 2009 from Wisconsin Tool and Stamping (I was MIS Manager), I volunteered for Illinois Worknet (Mohamed Faheem) and started a blog for the unemployed: http://homepreneurs.net with related social media outlets. The various sites – Facebook, LinkedIn, WordPress, Twitter, et al. – have well over 100,000 visits, presumably from some of the many millions of unemployed and underemployed. I have attempted to assist those that I can.
I have enough money to survive for perhaps two more months. I will then default on all debt. I do not live frivolously: I drive a 2006 Toyota Matrix and live in a simple townhouse in Schaumburg with a second floor that is useless because of stair climbing issues (falling).
I know I am not nearly the only one in this situation. Many other friends and acquaintances with M.S. suffer from similar situations. Several either have gone into bankruptcy, live even at older ages with parents, or are on the precipice of financial ruin every single day. We have no savings, no cushion, and no room for error. This is very disturbing for a country that has so many millionaires and other wealthy individuals. I was born into a solidly upper middle class environment; I am now well below the poverty line. I am educated, experienced, and intelligent, yet have virtually zero recourse. Even with SSDI and a part-time job (an extra $1000 per month), I will not survive financially.
I have consulted with a bankruptcy attorney (Nate Pomrenze) and determined that even Ch. 7 bankruptcy (full liquidation) is unrealistic, insufficient, and inadequate. Basic monthly living expenses – food, shelter, medication – are not wiped out in Ch. 7 and SSDI (even with a part-time job) is simply not enough to survive, given my condition.
In 2012, I attempted and was approved for a stem cell transplant at Northwestern University and Hospital in Chicago with Dr. Richard Burt in the hopes of arresting or reversing my condition. Cigna medical (my insurance at that time) would not cover this still-experimental treatment and a third-party evaluator (appointed by Cigna) also ruled against my claim. I would need to pay for the transplant from my own pocket: the cost – $120,000 at minimum.
Why do I send this email? Each of you has faced difficult medical challenges in life for either yourselves or family members. You have better coverage of course than I, and the means to pay for better treatments and therapy. I represent an increasingly frustrated and “dismissed” segment of the population. We are a growing group of Americans – 400,000 cases in the U.S. (200 new cases per week) with a life expectancy of 6 years less than healthy persons, according to a recent study by the National Multiple Sclerosis Society. Though we are ever-hopeful of better treatments, most have seen scant progress in 100 years. We suffer indignities of falls, diapers, and struggle to get dressed and function every damn day.
Our hope for an affordable health care alternative has not occurred: as indicated for me, at least 2 prescribed medications are not covered at all in my Blue Cross “Gold” plan, and medical supplies are more than I can possibly afford (I boil catheters for multiple uses). Our hope for a faster transition to SSDI or financial assistance is non-existent. Instead, we spend what little we save over a lifetime with little hope for the future. Any chance at potentially life-altering treatments is likely impossible with AFA.
I am not asking for your pity, condolences, or sympathy. I am asking each of you to examine your own past medical situations and realize that millions in the United States are in similar circumstances (with MS, ALS, Lupus, et al.) You are somewhat fortunate: Annette Funicello, Richard Pryor, David Lander, Montel Williams, Teri Garr, and myself, not as much. I lay no claim to fame as the named individuals; I am Joe Average. The Joe Average you represent and I put into office with my votes. The Joe Average that coached kids’ little league baseball and basketball teams; the Joe Average that serves as an election judge; the Joe Average that worked his tail off to earn college degrees despite medical issues; the Joe Average that is shamed and regarded as irrelevant by society; the Joe Average that is facing homelessness in months.
I ask that you stand up and speak out for Joe Average and that you help me and others afflicted with better financial and medical options. We are American citizens and we should be afforded the rights and dignity of every citizen and certainly more than non-citizens. While I cannot speak for others, my father’s North American family history traces back to somewhere around 1790 when a Joseph Shaw arrived on American shores in an unknown ship. My family fought in WW 1, WW 2, Viet Nam, and Gulf Wars. We are free because they contributed and in some cases, paid the ultimate price.
There are two choices all face in some way: either we use our power and influence to help others survive and succeed, or dismiss emails, letters, issues and complaints as ranting from the disenfranchised. It is my hope that my votes over the years were not in vain.
Thank you for your time and attention.
Dion D. Shaw
P.S. Many dozens of people are bcc’d on this email (lawyers, media, Illinois residents) and I will post it on Facebook and other social media outlets I control as well. I am not afraid to speak up for myself, but I will not identify other individuals for reasons of privacy and no prior notification. I attempted to email each of you at the same time, but two of three were returned from servers. Rep. Duckworth seemed to go through.
P.P.S. This letter was posted on WordPress, Facebook, and Homepreneurs website over the weekend and distributed to various social media outlets as well.