Life and Death and Child Health Reform

As a child, Devante Johnson's future seemed to be full of promise. He made excellent grades in school and was a help around the house. His mother, Tamika Scott, worked hard, managing to raise three boys while pursuing a career, buying a house and completing a college degree. Mrs. Scott had a 401(k) retirement fund and private health insurance and was confident she was prepared for unforeseen emergencies. At 29, she took comfort in the belief that her family was secure.

But as we reported two years ago, her family's middle class security crumbled when her doctors told her she had Multiple Sclerosis and strongly urged her to leave her job because the stress of work would make her condition worse. With the dramatic loss of income and insurance, everything she was building began to slip away as she cashed in stocks and used money from her retirement fund to pay bills.

Fifteen months later, her problems worsened. Her oldest son, Devante, then 10, was diagnosed with advanced kidney cancer. Because of the family's reduced income, the six months of chemotherapy treatments Devante received were covered by Medicaid. At the end of the treatments, the doctors pronounced him cured. Six months later, the cancer returned. Devante and his mother were then told that a new three-year course of chemotherapy, radiation and constant monitoring were critical to Devante's recovery. As a testament to his character, Devante remained upbeat and optimistic about the new treatment.

Tamika Scott didn't plan to rely on government supported health insurance to protect her children but she had no other option. Devante's Medicaid coverage was essential for him to receive the life-saving care he required. Two months before the expiration of his Medicaid coverage, she submitted an application for Medicaid renewal to the Texas Department of Human Services, confident that two months was more than sufficient time for the application to be processed to allow her child's health care to continue without any interruption in coverage. One month before the deadline, she became concerned because she hadn't received notice that the application had been approved.

But there was still time, she thought. However, to be on the safe side, Tamika Scott submitted two more completed applications, followed up with dozens of phone calls, and faxed supplemental information. After six weeks, she found out that Devante's Medicaid application had not been approved and that it was going to be sent for verification of eligibility in the Texas Children's Health Insurance Program (CHIP). When she contacted the CHIP agency to check the status of Devante's application, she was repeatedly told they hadn't received it. The expiration date for Devante's coverage came shortly thereafter, and his access to life giving care was cut off. His treatments immediately stopped.

Tamika Scott re-mailed and re-faxed the application as she watched her son get sicker with no way to get him the treatment needed to save his life. Devante's growing tumor became a visibly protruding lump on his back. His pain increased and walking became difficult. He lost twenty pounds. He had to rely on free samples of experimental drugs as the only treatment available to him. But he didn't give up and never complained.

Mrs. Scott inquired on numerous occasions about the status of his application but never got a satisfactory answer. For four months, no one in the Department of Human Services told her the application was lost in the system and had never been processed. With no where else to turn, she appealed to her state representative. Through his intervention, Devante's health coverage was restored in one day. He was transferred to the University of Texas M.D. Anderson Cancer Center where he received first rate, comprehensive care. But it was too late. Devante Johnson, courageous to the end, died on March 1, 2007. He was 14. The medical cause of death was complications from advanced cancer.

He also died from a shameful and preventable failure of state and federal systems and the lack of a commitment to make sure every child in America gets the health coverage for which they are eligible. That's why I'm calling on each of you to join us now in demanding that Congress enact child health care reform legislation that simplifies children getting and staying enrolled in health care regardless of where they live in America.

To avoid more deaths like Devante's, access to health care must be simple and seamless. Currently, six million of the nation's nine million uninsured children are eligible for but not enrolled in Medicaid and CHIP largely because of state-imposed barriers that Congress can and must eliminate this year. These include known obstacles to enrollment like waiting lists and face-to-face interviews. Ultimately, the bill Congress passes must leave children better off than they are now, and in no case should any child be worse off. Congress is not there yet and they need to hear from you.

Follow Marian Wright Edelman on Twitter: www.twitter.com/ChildDefender

Comments

[RightWingMarine]

while this story is tragic I fail to see how it becomes the responsibility of me to pay for Devante's treatment. Why was the father's contribution to this childs welfare not mentioned? Why didn't the mother go back to work? But I'm sure this fate won't befall the rest of us after the govt takeover.

[jajenkins]

You are responsible, because had this child survived, he would have been responsible for your treatments when you are dying in hospital and on Medicaid.

It's called taxation, and that is how it works.

I live in Canada, there are problems with our health care system but this child's treatment would never have been stopped.

No doctor in Canada has to get permission to do anything at all, or to recommend any treatment of any sort. It is simply done, and the government gets paid for it.

There is no way to lose your coverage for a period of months: it's there from the day you're born to the day you die.

[DidiM]

RigtWingMarine: Given your comment - I must assume that you condone the unnecessary and premature deaths of hundreds of thousands of Americans - because they were forced into bankruptcy by their Insurers?

And you condone - the denial of life saving treatments to children?

RightWingMarine: This Canadian has learned that your Drug & Insurance industry is deadly and barbaric - but after reading your incredibly ignorant, and imo, outright stupid (Repub cut & paste) comment - I'm convinced my Top Ten List - (Repub Membership) not only has merit; I think I'll have to revise it - with you in mind.

http://www.politicallyincorrectandproudofit.net/index/didim-s-republican-membership-criteria-top-ten-list-

[RightWingMarine]

While I am pleased to be on your political hit list you neglected to address any of my points.
why wasn't the fathers contributions addressed in the article?
Since the boy was ill, why didn't the mother go back to work?
Why is force seen as the solution to this problem? Why can't the family solicit charitable funds?
How does this boys illness become my responsibility?

[pinkibus]

Send the story to Sarah Palin and the people who refuse to acknowledge that this is not what happens to anyone in any of the developed countries other than America the home of the brave who are enslaved by fear of serious health problems. That child's death is a murder and deliberate and premeditated at that.

[roboman]

It would seem that Sarah's concerns about government run healthcare are supported by this story which points to delays and negligence of a government-run healthcare program which resulted in this tragedy.

[johnwinner]

Medicaid has been crippled over and over again by state governments since Bush I in efforts to privatize it. According to federal guidlines for it (rewritten by a Republican congress), a person making some $20,000 a year should be able to support a family of twelve AND afford private insurance. No, I would say what we have is an example of the inevitable result of continuing privatization and deregulation.

[jajenkins]

I live in Canada, we have public health insurance.

No doctor in Canada has to get permission from anyone at all to perform any surgery or make any referral to any specialist.

There is no way a child could lose his/her coverage for a period of months: it's there from the day you're born to the day you die. It moves from Province to Province (I study in Saskatchewan but live in British Columbia: I just use my BC health card in Saskatchewan).

The system isn't perfect, but it is good, especially for pediatric care.

[DidiM]

pinkibus: I absolutely agree.. and they must be held accountable. It's the LAW. Time to uphold it for a CHANGE.

[roboman]

I feel terrible for this young man and how things turned out. It's a tragedy. But this reads like a condemnation of government healthcare programs. Bureaucratic bungling, waiting lists, delays in care for critical health conditions have been among the fears of the much despised townhall protesters. There's too much faith placed in government as a steward for healthcare in America. If you hate private insurance companies for denying care and coverage for sick people, you should also be outraged by cases like this and those in other countries where people's critical care is delayed for extended periods due to government waiting lists and doctor shortages.

[DidiM]

roboman: I don't know where you're from - but you're obviously not from ANY country with a UHC - system.

We're not barbarians and something like this would NEVER, EVER happen. No matter what your Durg co., loving media & Repubs profess! BARBARIC!

[cqyates]

So So true. My kids were on medicaid in GA, every 90 days you have to reapply. We were rejected because between the first app and the second, I became self employeed. When asked to prove my income I turned in a standard profit and loss sheet. They denied me because there workers couldn't understand it. My children and I are uninsured to this day.

[DidiM]

cqyates: I've been (fulltime) following your HC debate after having to endure John Stossel's stunning - misrepresentation of our (Canada) medicare.

And everyday I find out information that stuns me - even more than the day before!

Learning about the deliberate denials of life saving treatments and the Repub idiocy - being touted all over your airwaves, is exhausting enough. I can't for a moment fathom having to live it. Good Lord the stress level alone is enough to create all kinds of disease and chronic illness.

It makes ones heart bleed for you. I mean it. I wish you all - a system like ours and the rest of the free worlds. God Bless

[JusticeGKR]

Very moving story. Do we need to be shamed into doing the right thing about healthcare by stories like this? Or do we no longer bear shame as individuals and as a nation? Where is the voice of the Christian right on such questions? Where were the right-to-lifers when the Devantes of America's lives are in danger? It is so facile to say that we are proud of our country, but as every good parent knows, there are times when those we love most must be chastisd, lest we allow the basest aspects of our nature and our community (local and global) to triumph.