WAITING TO INHALE

BY: D.E. LOESCH

ST. LOUIS MAGAZINE

AUGUST 2002

GARY HAWKINS JR. CAN BARELY BREATHE.

 HE NEEDS A DOUBLE LUNG TRANSPLANT.

 CHILDREN’S HOSPITAL REFUSES TO GIVE

 HIM ONE, AND WON’T EVEN TELL HIM WHY.

 Gary Hawkins is 18 years old, but looks the same age as his two prepubescent sisters.  He weighs just 64 pounds and stands a couple of inches short of five feet tall.  He looks like a frail child, but he speaks with the certainty and foresight of a middle-aged adult.  He has cystic fibrosis, a disease that has stolen his childhood, made an oxygen tank his constant companion and could eventually take his life.

     Hawkins was first diagnosed with cystic fibrosis when he was 15 months old.  “He was getting sick and it wouldn’t go away,” says Hawkins’ father, Gary Hawkins Sr.  “That’s when we first realized that something wasn’t right.”  A doctor conducted various tests, then another doctor looked at his fingers, and knew.  According to Hawkins Sr., the fingernails on cystic fibrosis patients are curved at both sides and look almost like a dome.  A sweat test-which measures the levels of salt found in sweat and is considered the best test to identify cystic fibrosis-was conducted, and results were positive.  The family was shocked and devastated.  “I didn’t know of anyone else in the family that had had it, even though they said it was genetic,” says Hawkins Sr.

      In order to be born with cystic fibrosis, a child must have inherited the defective gene from both parents, neither of which may manifest symptoms of the disease.  According to the Cystic Fibrosis Foundation, on in 31 Americans is a symptom less carrier. 

      The bodies of cystic fibrosis patients produce abnormally thick, sticky mucus, caused by the failure to transport sodium chloride (salt) within the cells lining organs such as the lungs and pancreas to their outer surfaces.  The mucus blocks the pancreas, which prevents enzymes from reaching the intestines to digest food.  According to the Cystic Fibrosis Foundation, symptoms include persistent fatigue, coughing and wheezing sometimes accompanied by pneumonia, bulky stools and a voracious appetite that results in little or no weight gain.

      Treatment depends on the stage of the disease.  Besides antibiotics, chest physical therapy is one treatment, where vigorous pounding on the back and chest helps to dislodge the mucus from the lungs.  By pure chance, Hawkins Sr. had already been helping his son, who had trouble sleeping as a baby, by laying the boy on his chest and pounding his bottom.  “What I was really doing was pounding on his back and knocking the phlegm loose and then he would finally go to sleep,” Hawkins Sr. says.

      As he neared his teen years, Hawkins’ health went downhill quickly.  In 2000-a year and a half after being accepted into the St. Louis Children’s Hospital transplant program- Hawkins received a double-lung transplant from a deceased donor.  After the procedure, the team told Hawkins Sr. that if the transplant did not take, a second one would be needed.

      For about a year after the transplant Hawkins, for the first time in his young life, was a regular kid.  “I could do activities, I went to Six Flags like 30 times that summer, I tried to do as much as I could and be active,” he says.  Everything was going relatively smoothly.  Then he started to feel tired again.  “I noticed it at school,” he says.  “I was having trouble going up steps and lifting and carrying things, especially my backpack.”  His parents took him to SLCH again, where he was told they needed to perform an open-lung biopsy to make sure his body wasn’t rejecting the new organ.  He stayed in the hospital for a month, recovering from the biopsy and fighting his addiction to the pain medication OxyContin.    The biopsy revealed that Hawkins had developed bonchiolitis obliterans.  If left untreated, the condition, in which the lungs destroy themselves, would lead to death in six months to a year.  There are no known causes-although some theories point to the number of organ rejections patients have had in the past-and there is no cure.

      The day Hawkins left the hospital after the lung biopsy in September 2001, he was met by Dr. Stuart Sweet, director of the hospital’s lung transplant program, and the SLCH transplant team.  According to Hawkins, Sweet told him that his past behavior had not been compliant with the program, and he was therefore not being considered for another transplant.  The family said Sweet listed behaviors such as complaining about the tests and taking his medications.

      Afterward, Hawkins worked diligently to help to improve his health, adhering to his 24-pill-a-day regimen and doing his physical therapy, all the while hoping the transplant team would notice and put him back on the list.  Over the course of several months, Hawkins’ parents (Hawkins’ mother is remarried and declined to comment for this article) asked Dr. Sweet and members of the transplant team several times what they could do to allow Hawkins to be reconsidered for transplant.  They say they never got an answer.

      Finally, after a routine appointment in March, Hawkins asked Sweet again: What must he do to be reconsidered?  Hawkins and his father were ushered into a conference room where they were met by Sweet, one of the transplant coordinators, and another nurse.  According to Hawkins, Sweet said he would not be reconsidered for transplant.  Not ever.  Hawkins remembers Sweet saying that the transplant team had a one-chance-only policy and that Hawkins would not be eligible for another transplant regardless of his current behavior or medical condition.

      Hawkins alleges that Sweet added, “That is the policy and as long as I’m in charge it’s going to be, and I don’t see myself getting fired anytime soon.”  Sweet told the family all he could do was take care of any problems that may develop and help Hawkins die comfortably.  The family was stunned.  Hawkins Sr. says the family understood that first transplants come before second transplants, but never was a one-time-only policy discussed.

      Hawkins says various hospital staffers told him he wasn’t the only one disqualified as a result of his behavior.  “I really don’t know who (the other patients) are,” he says, “but I had people tell me that I wasn’t alone.”

      Adding to the family’s confusion was the fact that they had met several children who were on their second or third transplants.  Then there were the patients whose faces appeared on television and in newspapers, who inadvertently became promotional vehicles for SLCH as they discussed the multiple transplants they received.  The one-time-only policy seemed to be selective.

      When asked about the hospital’s refusal to put Hawkins back on the transplant list, Kim Groneck, senior media relations coordinator for SLCH hinted vaguely about rebellious behavior and the possibility that Hawkins may have smoked a cigarette.  The family vehemently denies the smoking charge (and indeed, to anyone who has seen Hawkins struggle to draw breath, the idea of his smoking is doubtful).

      Repeated requests for a reason as to why Hawkins was removed from the list-and even a notarized release from the Hawkins family-failed to elicit an answer from SLCH.  The hospital provided a brief statement from Sweet via the press office, and declined to comment further or to allow St. Louis Magazine to discuss the case with the staff.  “The outcomes following lung retransplantation are significantly worse than those after primary transplantation.  In our own experience, the one-year actuarial survival for retransplant is 50 percent compared to 77 percent for primary transplants.  Therefore, we consider each patient carefully before pursuing retransplantation as an option.  We cannot comment further on this specific case,” Sweet said in the statement.

      Hawkins admits to several instances of less-than-perfect behavior. “I won’t lie” Hawkins says.  “I messed up here and there.”  Once he grew frustrated and left the room after seven attempts to draw blood were unsuccessful, and other time he asked for a couple of minutes to catch his breath before a pulmonary function test, which involves a series of deep breath and hard exhales.  Most of the time the test was done when the patient is short of breath, but Hawkins says he was so out of breath he could barely speak.

      But according to Mark Fox, the director of the Transplant Ethics and Policy program at the University of Rochester, N.Y. and the Chairman of the United Organ Sharing Network (UNOS) Ethics Committee, those episodes should not matter.  “I don’t feel patients should be penalized for past behavior,” he says.  “Fifteen years ago, heart transplants were caused by things like valve disease-situations where the patient clearly had no control or responsibility.  Now we see more patients receiving transplants for thins like coronary artery disease, things which have modifiable risk factors that patients could change.”

      Anne Paschke of UNOS shares Fox’s views on behavior as a criterion for transplant status.   “The transplant team needs to evaluate your current behavior.  You can’t look at someone’s past-especially if they have made a real effort to change their behavior-and use it against them in an evaluation,” she says.

      Behavior issues aside, Fox believes that if the transplant team is aware from the beginning that a second transplant is not going to happen, they need to tell the patient immediately.  “Doctors have a responsibility to be clear with their patients about why they are not a candidate and what they can do to become a candidate again,” he says.

      According to Fox, each hospital with a transplant program develops and enforces its own set of rules, and may have different acceptance criteria.  With no standard set of guidelines, the decision can become political.  “It is political,” says a nurse at Barnes Jewish Hospital who is familiar with the Hawkins case and agreed to speak on the condition of anonymity.  “I don’t care what they say, transplants are not free from politics.  Money does talk.”

      The family’s financial situation is not supposed to make a difference, but it sometimes does.  “John Q. can happen,” Fox says, referring to the film starring Denzel Washington as John Archibald, whose son needs an emergency heart transplant-a procedure that Archibald can’t afford and the insurance won’t cover.  “Patients with no insurance can fall through the cracks,” Fox says.

       That is not good news for Hawkins.  He is a full-time student at an area college, but should he become too ill to finish his classes-or have to drop his status to part-time-he will loose his insurance coverage.  He would not be able to afford his medication, which totals up to thousands of dollars a year.  One prescription alone costs $500 for one months supply.  Without insurance, Hawkins would not be able to afford another transplant, even if SLCH were to put him back on the list.

      Hawkins decided to go public with the story of his disease and his struggle to get a transplant because he didn’t want to be like other families who were afraid to lodge complaints against the twin medical powerhouses of SLCH and Washington University.  Besides, he has nothing to lose.  “What can they do to me?  They can stop treating me, but I’ll find another hospital.  I want people to be aware of their policies and what could happen if they consider a transplant there,” Hawkins says.

      Hawkins Sr. goes even further. “I want this policy changed.  It might not be changed in time to save my son, but it may be in time to save some other child,” he says.

      Hawkins Sr. is frustrated that the hospital has given them no hope, no way to change the situation despite their willingness to do so.  “When you misbehave, you get punished.  If the behavior is corrected, you remove the punishment.  Here though, it seems that if you misbehave, you get sentenced to death,” he says.  “People who are in federal and state prisons correct their behavior and do their time-they’re at least given a second chance in society.”

      At this point, Hawkins says Dr. Sweet told him that if he didn’t like the service he was getting, he could go elsewhere.  Hawkins was angry, but he says he had to put up with it because he didn’t have another doctor, and at the time was too ill to even begin looking for one.  Since then, the family has been looking into changing health care providers, but the process would take time and money-two things Hawkins doesn’t have.

      As this story went to press, Hawkins Jr. and Sr.-both Civil War buffs-departed for a trip to Gettysburg, which they may extend to include Salem, Mass.  Father and son are both excited about the adventure, determined to enjoy life while they can.

      “I am scared,” Hawkins says “But I can take this.  I just have to deal with it as it comes”

Gary S. Hawkins Jr. at home