Beep’s Health Care Access Story

Beep’s Health Care Access Story

I’m describing my own situation briefly here. I know so many people personally who have similar stories, and there are many places online where huge numbers of fellow US citizens have shared theirs.

I’ve had health problems throughout my life, and remember many symptoms for which I now have the explanation. After an intense and difficult five-year search for what was wrong with me I was diagnosed with lupus at age 23. I’ve added to my diagnosis collection a bit since then, as well.

Unfortunately, since I got the lupus diagnosis right after aging off of my parents’ health insurance and within the time limits of my new policy to be able to cancel me, I became uninsurable right at the time I most needed good health care.

I wasn’t well enough to be able to find and hold down a job with good insurance. So I did not get to have a career, despite having gone to college. I’ve had to live in poverty in order to qualify for government-paid health care. I exist now on a combination of government aid and charity from friends and family, when they can afford to help me. The Great Recession is making this a very tough situation.

I have in recent years fallen through the cracks of work incentive programs, so that as things stand now I can’t try out part-time work at home, which I would very much like to do since my hope is that this kind of work would be doable even when I’m stuck in bed. If I add to my income in any way at all at the moment, I risk my health coverage becoming too expensive for me to afford.

I am actually already in financial trouble due to not having the money for my copays for doctor visits, procedures and medications, as well as my Medicare Part B premiums. These were until recently paid for by my state Medicaid program but were the victim of budget cuts.

My small disability check gets annual cost-of-living increases, and these alone have me in danger of reaching the dreaded “doughnut hole” in my prescription coverage, Medicare Part D. This “hole” is a large gap in coverage which is structured into the program. This program was crafted with a lot of input from private industry.

My regular maintenance medications, in the inflated-cost US health care market, are about $2000.00/month. No one I know could afford them if they were to want to help me by paying for them out-of-pocket.

I do know in my heart that I am more ill than I needed to be due to the stress in the past 23 years of having to scramble to keep my access to at least some health care insurance program. I did not ever imagine that finding ways to afford my health care would actually be my life’s work. It has been very difficult, stressful, frightening, depressing at times, and often makes it impossible for me to rest when I am seriously ill.

This experience has taught me that Americans really do need to come together to fix our broken system of health care access. I pray that I see this happen before I pass on. I want the generations who follow me who end up with chronic diseases will be able to lead far more normal economic lives than I have. I do not want to see my experience keep getting repeated, the way it does now. Some, of course, have it worse, and some have even died due to problems with access to health care in this country.

I share my story in the hope of helping increase awareness and so that others know they are not alone.

But I can't earn anything without my health coverage becoming too expensive for me to afford.

I'm already in trouble with not having the money for my copays for doctor visits, procedures and medications, as well as my Medicare Part B premiums. These were until recently paid for by my state Medicaid but were the victim of budget cuts.

Since my small disability check gets little annual cost-of-living increases, I'm in danger of pricing myself into the "doughnut hole" of Medicare Part D, the prescription drug program which covers me. The "doughnut hole" is a large gap in coverage that is structured into the program.

My medications are about $2000/month; no one I know can afford them. I admit I am afraid I will be one of the 18,000+ people in the US who die due to lack of access to good care. I've known people who passed away for this reason and so I can't deny that it happens.

I also know that I am more ill than I needed to be because the stress of always having to scramble for sustenance and health care coverage has been exhausting. Not only did I not want this to be my life's work, but it has been very difficult, depressing at times, and often makes it impossible to rest during the times that I am seriously ill.

This is why I know Americans must stop hating each other and work together to fix a broken health care delivery system. I pray I see this happen before I pass on so that I will know that the generations to follow me who end up with chronic diseases will be able to lead relatively normal economic lives and not have my experience repeated. We should not throw lives away because we won't fix health care. I share my story, which I know is one among many, in the hope of helping others.