Sunday, August 30, 2009

Fight for the Little Guys

I know that I want to say something, but I’m just not sure what nor how, so please bare with me.

Since being diagnosed with multiple sclerosis, I’ve learned more than a few things about how our insurance and health systems work. I’ve learned how it doesn’t work for the “little guy” - the self-employed, the individuals without access to protected group coverage, the folks living with chronic illness, those who truly cannot afford health insurance coverage but who fall right through the safety net programs.

According to the Centers for Disease Control and Prevention, chronic disease causes major limitations for 1 out of 10, or 25 million people, in the United States. Chronic diseases account for 70% of all deaths in the U.S., which is 1.7 million each year. These statistics from the home page of the CDC’s Chronic Disease Prevention and Health Promotion website.

When you are living with a chronic illness, access to health care services and providers is a basic necessary. In our country, obtaining access is expensive so health insurance coverage is also necessary. But if you have a chronic illness, then obtaining health insurance is a tricky matter. It’s not too bad if you are able to maintain employer-sponsored group health coverage because there are protections provided by law.

The regulations, however, differ from state to state regarding pre-existing health conditions. There is no basic standard of “no pre-existing condition coverage exclusions in the group market” which would simplify the rules. Simplification would eliminate so much wasted effort in trying to determine which rules apply to any given situation. Simplicity is good!!

But notice that I only mentioned employer-sponsored group health coverage. What about individual health coverage?

Well, individual health insurance coverage is a whole different ball game. The individual market does not have to play by the same rules as the group market. In fact, the individual market varies even more greatly from state-to-state. See Kaiser State Health Facts.

Do you recall when the Mental Health Parity Act was passed in 2008? Very exciting development in reforming health care. However, it only applied to group health coverage provided by employers, with more than 50 workers, who do not meet a cost exemption. Not for individual policies, not for Medicare, not for small businesses - only large groups. Again, not playing by the same rules but a move in the right direction.

So far these incremental moves are working to improve the health coverage of large groups, not the “little guy.” These changes do nothing to protect those of us exiled to the individual market and not eligible for assistance. I remember when Rudolph Guiliani was running for president. He advocated for millions of people to flood the individual market which would supposedly prompt insurance companies to create less expensive (meaning less comprehensive) policies to “meet individual needs and not government mandates.” I wanted to scream at the top of my lungs - No! NO! You do not want to have what I have. Stay safe and protected!

But as time has gone on in the past 2 years, I begin to have mixed feelings. I wish the best for others and hope that they may stay safe and covered. However, I also begin to wish that more people understood what being one of the “little guys” is like. Those who lose access to their employer-sponsored health coverage find it a cruel and expensive market out here.

With this in mind, I shouldn’t be surprised that the people around me who are fearful of the “health reform bill” are ones who are safe within their employer-provided, subsidized, tax-free, group health insurance coverage. And some of these same people believe that the safety net programs or charities will provide for those “truly in need.” So, next question is what does it mean to be “in need.” This is a tough one to answer, so I’m not even going to try right now.

But why are so many fearful of the health reform efforts being discussed publicly? Is it the fear of change? Is it the “I have mine, now you need to go get yours”? I was told before to “get a good job with benefits.” Well, lots of people are looking for jobs now, period. But what about those who live with chronic illness who may also be limited in their daily activities. Could each of them find a job with good benefits and maintain employment?

Before being diagnosed with multiple sclerosis, I felt safe in having had the foresight to obtain health coverage when I was healthy. I even obtained the highest level of coverage available to me as a self-employed freelance musician. I was proud to be acting as a responsible grown-up.

After being diagnosed and prescribed Copaxone (which costs about $30,000 each year), a friend at the swimming pool asked me, “will your insurance cover it?” See, she has a son who has MS and was well aware of the disease and its treatment options. I innocently replied, “I guess we’ll find out.” Obviously, I thought that the answer was a given. Copaxone was listed on the formulary and my insurance had drug coverage. Well, I learned that it wasn’t that simple.

After struggling with the insurance company and basically begging the assistance program for the help I needed, I learned that nothing is truly that simple. I fell right through the big gaping holes in the safety net programs. Not just one, but many of them. Even my parents who are secure in their FEHBP coverage have had their eyes opened to the problems with our health insurance industry and the lack of federal laws to regulate the ENTIRE system, not just portions of it.

So why are others so fearful of reform? and fearful of having the government establish a level playing field for all? I’m somewhat baffled by this. We have such a mishmash jigsaw puzzle of a system, what is so wrong with creating a system which would truly promote choice and competition?

So here’s what I want to say today - I’m one of the “little guys” and I need the help!!


  1. I'm not even a "little guy;" I'm a "nowhere guy!" I had fairly good insurance when I was a teacher, then a principal, and my Avonex, then Copaxone was always covered. I probably would have been one of those opposing reform because it just didn't affect me. Then, I had to stop working, went on SSDI, and tried to get along with private insurance. I got assistance for my Copaxone from NORD. Then, I could no longer afford to pay the insurance premiums, and had to drop it. Now I wait, with great anxiety, for Medicare to be available -- still over a year away. I can't see my neurologist, and I pray I don't get sick or have an accident which could require hospitalization. Now, I'm definitely one of those in favor of reform. Unfortunately for me, it won't come in time.
    Thanks for a very thought-provoking article!

  2. The "safety net" is more hole than net. I just retired on disability. COBRA will extend my employer's group coverage for 18 months -- but will cost me $1200 per month. This is for good, but not extravagant, coverage for my healthy daughter and me (SPMS). And after that... what? This is nuts!

  3. This happens to so many of us. My cobra insurance was going to be up in November. However, with my hubby not having a job effective Sept 1st I am lacking any health coverages. Which to me is VERY scary.

    Employers now have so many people needing a job that they can hire them or contract the employees out without paying them benefits. That is what we are running into in TN. No one wants to pay benefits, they would rather just keep you as a contractor.

    You made some excellent points in your post Lisa, and I agree those of my friends who have employer based group health coverage do not want nor are they concerned with healthcare reform. It's only for us little guys to worry about. *Sigh*

  4. In America the little guys always walk behind the big guys, hoping to catch a crumb. It is true when we buy a house, seek education, pursue a career---it really is the American way, red, white and too bad for you. Now there is a large population of sick Americans so health insurance is the main attraction. Insurance companies saw this coming, something called "baby boomers." They began their plan to step on the little guys, long ago and far away in a galazy called GREED. Drs. saw it coming since they are in the Big Guys Club and they began to plan their greedy path by splitting into specialists/forming corporations, whatever made them feel safe from political shouts of the Little Guys. If only the money both spent on lobbyists had gone toward lower costs...but then their galaxy might turn inside out!
    Well, as recent big guy deaths have shown us, illness doesn't play these games. Illness will fall the big as easily as the little. No amount of money buys a "Get out of death free" card. And when the big guys are at death's door, no window will open to let any breeze blow away their inhumanity. I sleep soundly in my little guy bed; I wonder if they know what THAT feels like.

  5. I too am in trouble. I am one of the "little guys". I have to stay on (or go on) Medicaid which limits my income and not stay on Medicare because it only pays 33% of Copaxone (HA!) under Plan D.

    I get it free for now because the drug company gives it to me. I was fortunate to be "poor enough" which is ironic... I need money to subsist on, yet I can't afford to work to get my Copaxone.

    A tricky wicket indeed.