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Stories from Americans

“For people with disabilities, the health-care system is about more than medical care. In many ways, it is a critically important bridge to our freedom and our civil rights. I was able to work for many years in large part because of the assistive technology and health-care services I received. Now that I am on disability, I continue to be involved with my family and my community thanks in large measure to the health care services available to me. I believe such health services should be available to all Americans who need them.”

“I am a nurse and have had many experiences with clients that are mostly negative in trying to obtain and or use health insurance. It is too confusing and complex, discriminatory and unpredictable. You have to spend part of your life applying, reapplying, updating, and then advocating vigorously for care.”

“I am a family physician in northern Michigan. The daily stories of financial hardship, the inability to access medications, studies or specialists creates constant suffering for many of my patients. These are hard working folks and their loss of dignity appalls me in this great nation. This is for everyone from the disabled, the working poor, the middle class, and the elderly. We must and can do better.”

“My son age 32 has Glioblastoma grade IV (Brain tumor), with the outcome of 18-24 months to live. . . He will now start another round of chemo for 5 days a month and off chemo 23 days a month for about a year. He has insurance through his work that is helping. His chemo alone is over $9,000 a month. Because of this high medical cost, he is fighting to try to work. As sick as he is, he continues to work. Without his job he has no insurance and this is not righ. When someone has a terminal or catastrophic illness, where is the government to help? For Medicare/Medicaid I have been told that you have to lose everything to qualify for this, and it takes longer to qualify then my son has to live. It amazes me that in this rich and prosperous country we live in, that people who are suffering suffer more. If this was your son what would you be doing? When a doctor looks you right in the eye and says your son has 18-24 months to live your life changes for ever. Selling the farm to help him is what we are doing. . . . The money spent on research is very important, but I also believe that the money we spend on helping our young, elderly and sick must also be what our country and nation is about.”

“Every one refers to the insured and the uninsured. I fall into the category of the underinsured, I guess. I have an individual insurance policy (which covers only me). For that I pay $354.50 a mo in premiums, and the policy has a $2,000 annual deductible. So I pay almost $7,000 a year before my insurer will then pay 80% of costs.. . . the last few years I have not gone in for my "annual" exams (ie mammogram or pap). They have become every other year simply because I cannot afford them. . . . My retirement funds are not that great, but I own my own home. That keeps me from being eligible for low income subsidies. . . I need to decide which is more important to me, retirement or health. All I know is, I can't have both.”

(Comments submitted to the Citizens’ Health Care Working Group)