An Affordable Public Health Plan Option Needed By Families With Special Health Care Needs

An Open Letter To Government Leaders and Health Care Advocates:

I am writing to you to ask that you support an affordable National Public Health Care Plan with a waiver option. My husband and I have been married for more than 22 years. We have three children with Cystic Fibrosis, one adult child with a severe Brain Injury, and one healthy child. Cystic Fibrosis is a genetically inherited terminal disease which greatly decreases life span and affects all organs of the body. The costs for treating Cystic Fibrosis patients includes multiple expensive non-prescription and prescription only medications, therapies, and excessive costs for the purchase of food because their bodies require more calories than usually recommended for average individuals. Our adult sons Brain Injury was caused by a drunk driver hitting us when he was five years old which has left him the mental and intellectual equivalent of a five to seven year old child for the rest of his life.

Our children with special health care needs are currently covered by Medicaid because we maintain our income under the Medicaid cap and our children’s health conditions require extensive and very expensive medical care which has allowed them to be declared “disabled”. My husband, myself, and our healthy child are uninsured and we can not afford private health insurance nor do we qualify for any public health program. My husband suffers from a chronic digestive disorder which affects his food consumption to limit the amount of pain that he endures. He refuses to go to the hospital or doctor for treatment because he doesn’t want to financially hurt the family since he earns the majority of our income as a self employed non-employer small business owner. We can not afford health care for my husband and we are constantly afraid that his condition will worsen or take him from our family.

I lost the ability to use my legs in April of 2008. I ran up large medical bills that I can never afford to pay to find out that I am dying from a neural condition/disease and multiple tumors. It isn’t that my condition is incurable, they could have operated and removed the tumors and given me medications to help which may have cured me or at least increased my life span. It was simply that I did not have the financial means to pay the medical bills and am uninsured. I was told by the doctors at the hospital that since I refuse to be hospitalized indefinitely, I am uninsured and can’t afford to pay for medical care, and I do not qualify for any public health or charity care program then I should go home and learn to live with it for as long as possible because they couldn’t do anything more without guarantee of payment. I know that the longer I wait to obtain health care, the less they will be able to do to help me and this neural condition/disease and the tumors will kill me but I don’t have any option. My condition is steadily deteriorating and even though the doctors said I have up to ten years depending upon how fast it progresses, I fear that I will die before I can afford health care. I don’t want to die, I don’t want to hurt my family, I don’t want to leave my children and husband, but I don’t know what to do. I can not express to you the emotional pain and fear of knowing that regardless of what I do, I will not be able to save my family from pain and heartache because I can’t afford the health care that may save my life.

I understand that I am just another number, just another story among millions. There are millions of families that are suffering because they are unable to afford health care. Many of these families earn between 200% and 400% of the Federal Poverty Rate. Many of those families have special health care needs which make private health insurance completely unaffordable. Those families have to make a choice just to obtain health care for their chronically ill children to limit their income to try to qualify for current state Medicaid and Disability programs which doesn’t leave enough income to afford private insurance for the healthy family members. Many parents, just like us, find themselves trapped by a system that they are required to participate in for the sake of the children with special health care needs but does not offer any benefits to the parents when they become ill. 49.3 people die per day because they can’t afford health care and they have a condition/disease/illness that goes untreated, we lose 18,0000 people a year in this country because we have a for profit health care system that they can not afford to access. My family is already a statistic because of our children’s health conditions. I don’t want to be another statistic, especially not a death statistic.

I am writing to you to ask you to please support a National Public Health Care Plan that has a sliding fee scale based on income, family size, and the individuals medical condition. Current Public Health Care Programs promote family divisiveness and family financial hardship. Current Private Health Insurance punishes those with chronic conditions by making the cost of that insurance unaffordable. Current Public Health Care Programs and Private Health Insurance allow Medical Professionals to refuse participation and limits accessibility for those that need to access health care. We need a National Public Health Care Plan that will be affordable for everyone, that supports individuals and families with special health care needs by offering them a large discount, like a waiver program for those who can not afford the costs of premiums, and that covers procedures and treatments and medications that will save their lives and enable them to be productive contributing members of our society. We need a National Public Health Care Plan that requires Medical Professional participation and bridges the current gap in available health care coverage to those that need to access health care but yet can not afford traditional and currently available programs.

I admit that my request is a selfish one because it directly affects me and my family. I am going to die sooner than I should without access to health care, my husband is always in pain, and I don’t want to hurt my family but I don’t have any option except to ask you to support a plan that I can afford to access. I am also asking because it breaks my heart to hear the stories of so many other families and to know that 49.3 people per day are in my same situation and lose their lives when we could have saved their lives simply by providing access to health care.


Beautifully written

Thank you for sharing and know that we will keep fighting, pushing and pulling for the right legislation to come out of congress until it is on the President's desk.

Maybe we need to write a signing statement for him just in case the House and Senate don't pull through.

Vote Democratic! The ass you save may be your own.

Signing Statement, Advocating for True Health Care Reform

I would support a signing statement and think it is a good idea. I have advocated for families with children with special health care needs for years now. I have shared our story in many formats and with many forms of media but our story has changed over time now with my condition. I strongly believe that if enough voices are raised then they will have to listen and do as we ask. At least I have to hope that is true. I have always wanted and wished to do more because I know how precious life is and how the current health care system hurts too many people. If you hear of any other way that I can help promote health care reform then please contact me.