...a life to live
I am writing to relate the medical story of my beautiful wife, Amber Soffea Bennett. Amber came to the United States from England some three years ago to seek medical treatment for a complicated, rare, and as-yet-unnamed non-HIV autoimmune condition. Indeed, Amber’s diagnosis and treatment proved so difficult to accommodate for her native Britain’s socialized National Health Service (NHS) that she was advised by certain authorities in that administration that “it would be cheaper to let her die.”
Now a legal resident of the United States, Amber’s is a true modern story of one who has sought opportunity and refuge in this country from a branch her own government’s failure to respect the most fundamental of human rights: the right to live.
The difficulty our family has found is that obtaining diagnosis and treatment for Amber in the United States ’ “free market” health care economy has not proven to offer completely superior solutions as compared to Great Britain ’s socialized system. While Amber has received excellent, top-notch attention from physicians at UCLA and Stanford University, continuing that care has proven impracticable because she lacks medical insurance.
Such insurance has, in turn, proven impossible to obtain because her medical condition falls into the category of “pre-existing.” Our family tends to generate just slightly too much income for public health benefits, but too little to pay effectively out-of-pocket for the care associated with the sort of institutions required for her complicated medical condition. In any case, one of the conditions of sponsorship for legally permanent residence in the United States is that sponsors must demonstrate income above poverty level and guarantee to reimburse Federal and state governments for any means-based benefits paid out for the resident alien.
As Amber’s husband, I am also Amber’s sponsor, and therefore ultimately responsible to repay any Federal or state government for her care. The financial brunt of Amber’s medical condition thus falls on our family’s finances, supported by very limited donations from church, friends, and extended family. One is reminded that this financial burden has already been rejected by one major industrial nation as cost prohibitive. Progress on improving Amber’s quality of life under severe medical circumstances has proven torturously slow.
This letter comes to you by way of an appeal for help. Amber’s is a compelling story not only from a human interest standpoint, but also one that directly relates to important issues in the 2008 presidential election.
Amber’s story implicates all of the considerations associated with health care reform in the United States: the effectiveness of socialized health care versus laissez-faire reliance on the availability of some insurance in a purportedly free market, some middle ground solution that involves political and economic factors as complicated as Amber’s own medical condition, and all of the considerations associated with human rights and dignity. And of course, our family’s interest in the present health care environment requires exposure: our only option is to find charitable sponsorship by “getting Amber’s story out there.”
Amber is worth saving. While her condition is life-threatening, Amber refuses to be bedridden. Six years ago, while still in England , and suffering severe, aggressive internal inflammation, Amber at 5’7” weighed 52 pounds and was confined to what was taken for granted to be her death bed. Since that time, Amber has fought to restore her body weight to some 94 pounds; since coming to the United States , she has been able to abandon use of a wheelchair and walk on her own. However, irregardless of all her tenacity, increasing her quality of life beyond her present condition has simply proven beyond our means.
Despite all the odds, Amber is grateful to run her own unique online organic business, which you can view by clicking on this picture here.
Amber’s business is her great attempt at self-reliance in the face of the most adverse of circumstances. Unwilling to wait for insurance or potential charitable sponsors, Amber attempts everyday to meet her own medical financial needs one packet of seeds and one bar of soap at a time.
We hope you will see how media exposure of Amber, her story, and her situation may not only help their family, but a great many other Americans as well who are caught in similar crises.
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Photo by: John De Boer
New Brunswick, Canada
