Chapter  16: The Allocation of Resources: Scarcity and Triage

Section 1. Case Presentation

CASE PRESENTATION: Sandra Jensen-35yo with Down Syndrome

Should there be discrimination based upon impairment  ?- Summary by James Rowe, QCC, 2005

 Sandra Jenson’s Organ Transplant 

Sandra Jensen, at age 35, discovered that she was born with a deformed heart which would require her to undergo heart transplantation in order to not die. Jensen was in great health aside from one thing: She had Down syndrome. Owing to this, there were questions as to her capacity to care for herself after surgery, with questions raised as to whether she had the mental capacity to follow the complicated matters of taking the drugs needed to assure the transplant wouldn’t be rejected, the failure of which to do so would result in her death and the wasting of the organs she received. As her advocate, William Bronston would point out that she had been able to graduate from high school and worked with people with Down syndrome, as well as living on her own for several years. She even attended the signing by President George H. Bush for the Americans with Disabilities Act of 1990. Partially owing to this lobbying, on the 26th of January, 1996, Jensen would be given her new heart, the first seriously retarded person in the United States to be given such a major transplant. However, she would die a bit over a year later, on May the 25th, 1997, having suffered from the adverse reactions to the immunosuppressive drugs, although owing to her, the California State Assembly would pass a law prohibiting transplant centres from discriminating against the mentally impaired.  

CASE PRESENTATION: The Ayala's Solution: Having a Child to Save a Life: Child as organ bank?  Summary by James Rowe, QCC, 2005 

Having a Child to Save Another: 

            In 1988, Anissa Ayala, fifteen years of age at the time, was diagnosed with chronic melogenous leukemia and required a bone marrow transplant. Neither her parents nor her elder brother, however, had compatible bone marrow with her, and with her chances of finding a donor from a random sampling being almost 1 in 20,000, they decided to have another child. Despite the mother being forty-two and the father forty-five and having had a vasectomy sixteen years before, they were able to conceive. Word somehow leaked out to the media during this time and criticisms ranged from turning people into organ banks to not properly viewing a child as a person of unique worth. Counter-claims were made by supporters who noted that reasons were never an issue in other births, with the mother also stating she wanted a child and the father noting that he would love her even if the child did not prove to have bone marrow compatibility with their elder daughter (which in three cases out of four is the case).            In February of 1990, it was found that the developing baby had bone marrow compatibility and on the 6th of that year, Marissa Eve was born. Fourteen months later a bone marrow transplant would prove successful.

Babies for Parts

CASE PRESENTATION: The Drug Lottery: The Betaseron Shortage: 67,000 (7,000 late) applied for 17,000 doses Summary by James Rowe, QCC, 2005

Multiple sclerosis (MS) is a crippling neurological disorder with symptoms including dizziness, slurred speech, vision loss, tingling sensations, muscle spasms, fatigue, amongst other things. Some 300,000 Americans suffer from the disease and, in extreme cases, it can lead to paralysis. One third of these suffer from a specific type known as relapsing-remitting MS, where he disease ceases for several months at a time only to come back periodically for several weeks, with symptoms generally increasing in severity each time. For those who suffered from this type of MS, Betaseron, a drug approved by the FDA in 1993, which was able to reduce the frequency of attacks by 30 percent in the earlier stages and could even slow the progression of the disease in the brain. So much was the demand for this drug that it produced a massive shortage and owing to the process to make the drug, which included fermenting genetically engineered E. coli bacteria, the drug could not be made any quicker. A solution was needed and was found.

            Berlex, the company which produced Betaseron, adopted a whole new method of dealing with shortages: A drug lottery. Those who were certified by their doctor to be in the early stages of this type of MS and could walk for one-hundred yards without assistance, were allowed to apply for the drug, of which 67,000 people did by the deadline for the drawing, plus 7,000 more who missed this deadline. Those who applied would be randomly sorted onto a list which if one got a number beneath 17,000 – the top limit for those who could be immediately treated – would get immediate and sustained treatment (intermittent treatment was not considered a good thing to pursue) with those who did not having to wait until more became available. As an impartial process, questions of fairness could be put aside, although criticisms did come from patients who didn’t meet the list’s requirements, or from doctors who felt this took the control away from them to determine which patients truly needed the drug. Complimenting this system, Berlex also would go onto introduce a system whereby those without insurance and who made less than 20,000 dollars a year would get the medication for free, with those uninsured and earning up to 50,000 a year being placed on a sliding scale of reduced rates, as well as all patients getting the 11th and 12th months of the drug for free.

            The drug shortage ended in 1994 and although some of the response was mixed, it is generally conceded that a similar lottery approach may be the best solution for future drug shortages of this type. Considering that many approaches for new drug creation may be related to genetic engineering, it is likely that a duplicate of such an event is possible.

CASE PRESENTATION: Selection Committee for Dialysis (circa 1969)

Transplants kidneys and machines

Allocation Scarcity

Kidney machines

Dialysis Costs

Microallocation vs Macroallocation

Organ Allocation

Transplant Turmoil

Child Parent Donor

Cadaver Kidneys as Effective

Live Donor Safety Concerns

Live Donor Death

Paying for parts

Presumed Consent

Smallpox Strategies

Cryonics

 

 

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© Copyright Philip A. Pecorino 2002. All Rights reserved.

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