[Congressional Record Volume 140, Number 67 (Wednesday, May 25, 1994)]
[Senate]
[Page S]
From the Congressional Record Online through the Government Printing Office [www.gpo.gov]


[Congressional Record: May 25, 1994]
From the Congressional Record Online via GPO Access [wais.access.gpo.gov]

 
                    FACES OF THE HEALTH CARE CRISIS

  Mr. RIEGLE. Mr. President, I rise once again in my effort to put a 
face on the health care crisis in our country. Today, I would like to 
share the story of Jessica Alagna, a 5\1/2\-year-old child from DeWitt, 
MI. Two months ago surgeons performed an intestinal transplant on 
Jessica to correct a birth defect. The transplant cost $500,000. It 
saved her life, but because her health insurance considers it to be an 
experimental procedure they refuse to cover the transplant or any of 
her care. Jessica's story has received a lot of attention in my home 
State of Michigan due to the work of the nonprofit foundation, Jessica 
& Friends.
  Jessica was born on September 11, 1988, with her intestines knotted 
outside of her body, a rare condition called omphalocele. Emergency 
surgery 7 hours after birth saved her life. After 11 days in the 
hospital, Jessica was able to go home with her mother, only to have to 
return for many additional surgeries to remove infection in her 
intestines. Jessica was left with only 8 percent of her intestine 
remaining.
  Until her transplant Jessica was unable to eat solid food. For her 
entire 5 \1/2\ years of life the only way she could get food was 
through extremely expensive nutritional supplements supplied through a 
permanent catheter. Although these supplements kept Jessica alive, they 
caused extensive liver damage and other complications. Last summer 
Jessica's physician told her mother that the liver damage was so 
severe, Jessica would die within 6 months if she didn't get an 
intestinal transplant.
  Jessica's mother, Sonia, married Patrick Witty in June 1993. Patrick, 
28, works as a supervisor with the Parks and Recreation Department of 
the city of Grand Ledge. Sonia, 25, is currently working on a nursing 
degree through the local community college. Patrick has employer-
provided health insurance, but the insurance company refuses to cover 
Jessica because of her pre-existing condition. And because of Patrick's 
income, the family is not eligible for Medicaid coverage either.
  Sonia purchased a private health insurance policy for Jessica. The 
cost is high even though it did not cover the transplant. Primary 
insurance coverage costs $1,150 per month. In addition, Jessica has 
secondary insurance offered through a State program for chronically 
disabled children that costs $1,600 per month. Altogether the family 
pays $33,000 a year for health coverage for their little girl. Sonia 
and Patrick must rely on help from family and friends to meet these 
insurance costs.
  In an effort to raise the money needed to pay for the intestinal 
transplant, Jessica's family formed a foundation called Jessica & 
Friends. Bake sales, concerts, and craft shows have raised about 
$75,000 toward the half-million dollar cost of the surgery.
  Intestinal transplants have been performed since 1990 and they have a 
phenomenal 98 percent success rate. Fourteen other States now cover 
this innovative procedure through their State Medicaid and disabled 
children's programs because they have been sued by families just like 
Jessica's. Sonia and Patrick do not want to have to take the State of 
Michigan or their insurance company to court. Ironically, Jessica's 
insurance plans have already paid $1 million to keep her on her 
nutritional supplements, but they would not pay for the one surgical 
procedure that can save her life. Overall cost savings and enhanced 
quality of life for the patient are not considered in these insurance 
coverage policies.
  Since the transplant on March 25 at the University of Nebraska, 
Jessica is doing very well and has even begun to eat regular food in a 
puree form. Jessica was discharged from the hospital on April 7 after 
passing a critical period for organ rejection. She no longer requires 
the catheter and meets her nutritional requirements through a feeding 
tube directly connected to her intestine. Her doctors believe that she 
could have a normal lifespan. She and her parents will spend the next 3 
months in Omaha, NE, while Jessica's recovery is closely monitored on 
an outpatients basis.
  Jessica's family is resigned to having their medical bills submitted 
to the insurance company and subsequently rejected. Luckily, the 
medical center is willing to wait, accepting further payments through 
the ongoing fundraising efforts on Jessica's behalf. But the bills are 
still piling up because none of Jessica's follow-up care is being 
covered by her insurance policies. These insurance companies refuse 
coverage because the follow up care is related to the initial procedure 
they defined as experimental. The family has considered the possibility 
that the financial burden of these medical costs will lead them to 
declaring bankruptcy. But they feel it is worth whatever it takes for 
Jessica to have the life of a normal child.
  Mr. President, the experience of Jessica and her family illustrate 
what is wrong in our current health care system. Insurance companies 
today either refuse coverage or charge incredibly high premiums to 
avoid covering sick children. They have incentives to not cover 
lifesaving procedures, in order to save money. Families like Jessica's 
should not be faced with declaring bankruptcy so that their child can 
live a normal life. Our current system is neither fair or efficient. I 
will continue to work with the President and my fellow Members of 
Congress to enact comprehensive health care reform this year.

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