Friday, July 23, 2010
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LOGO: i sing my heart out
Monday, July 12, 2010
mic
another logo IDEA
Tuesday, July 6, 2010
my new project: sing your heart out
To anyone who may be able to help us:
First, please accept our apology if you receive multiple copies of this email.
This letter is a request for information to help resolve a threatening health insurance situation faced by our daughter, Joanna Reid. Joanna has multiple extremely serious medical conditions that have required numerous operations and other major medical interventions. Currently and for the foreseeable future she is completely dependent on continuous pharmaceutical support and multiple weekly appointments for specialty medical treatment. Joanna's medical costs have totaled in excess of $8 million over the last 9 years ($1.3 million in the last 6 months alone). She has been fortunate to have had excellent health insurance coverage since she was a child, but that insurance is due to terminate early this fall. The details are given below, but suffice it to say that there appears to be no options for extending her insurance with the current carrier. Obviously, Joanna will have extreme difficulty in acquiring health care coverage with her severe and extensive pre-existing conditions.
The intended audience for this letter includes professionals knowledgeable about the health insurance industry or individuals and families that have experienced similar circumstances. While information about the successful resolution of a similar case would be wonderful, any information about what has been attempted will be useful. Therefore, we are asking that if you have no information to contribute yourself please forward this email to anyone you know who might be of help.
Joanna is currently insured though the Mail Handlers Benefit Plan (Coventry Health Care) on a Temporary Continuation of Coverage (TCC) as an extension of our family coverage under the Federal Employees Health Benefit Program. TCC is the equivalent of COBRA for federal employee dependents which begins at age 22 and runs 36 months.
Joanna faces life threatening conditions if her access to specialist medical care is interrupted. Among a number of serious conditions Joanna suffers from the following constitute both the most persistent and most expensive to treat.
1. Ehlers-Danlos Syndrome which a tissue defect that has resulted in diminished wound healing capacity and joint fragility and frequent dislocations.2. Common Variable Immune Deficiency that compromises her ability to fight infection.
3. Severely elevated intra-cranial pressure resulting in the leakage of cerebrospinal fluid with accompanying recurrent bouts of meningitis.
4. A variety of serious neurological conditions that have required and will require a range of neurological and neurosurgical procedures.
This combination results in repeated life threatening episodes that have required numerous neurosurgical and reconstructive surgical operations and extensive hospitalization for meningitis (and other infections) and wound management. The above combination of conditions results in open wounds that harbor infections that pass to the cerebrospinal fluid resulting in meningitis. Joanna has had four cases of meningitis since the beginning of 2010. For these and other reasons Joanna is dependent on continual medical and pharmaceutical support for her survival and will remain that way for an indefinite period of time.
We have explored the options we know about and are left with no clear path. Under our circumstances any gap in coverage could be disastrous. The recently passed health care reform law may provide relief through the establishment of coverage under a high-risk pool. Unfortunately, we cannot count on that because of the requirement of six months without insurance before one can enter a pool. Another provision of the law the extension of coverage for unmarried dependent children to age 26 does not help even for the one year since Joanna is married. We would have an option under Social Security and Medicare for disabled dependents except that it also applies only to unmarried dependents and in any case has a waiting period.
Without access to health insurance a near complete loss of the ability to get this extensive and expensive care for her is very probably a death sentence. This dire projection is not an exaggeration. According to a Harvard University study there are in excess of 45,000 deaths a year in the US directly attributable to the lack of health insurance.
This situation also threatens our family with an economic disaster as we could only sustain the cost of her care for a short while – likely no more than a year or two under the best of circumstances. Joanna’s medication alone is running $75,000/month. We certainly hope that the current crisis can be averted in the near future, but as Joanna's underlying conditions are not correctable with current medical technology that would likely only delay the inevitable.
We have an urgent need for any professional knowledge or experience that could be of benefit. If you have knowledge of a similar case that has been resolved successfully or approaches that do not work please contact us. If you know of anyone who appears to have experienced a similar situation please let us know. Even if you have no information to contribute please forward this email to anyone or any institution that you believe might conceivably be able to help. Once again, any contact may be useful and since Joanna’s situation is already life threatening it is critical that we search as wide a range as possible.
Your help is greatly appreciated.
Joseph Reid and Cindy Stark Reid
For more information about her story visit: www.caringbridge.org/visit/joannareid