Peggy Maze Johnson, a longtime political activist, used to think it was hard work to get out the vote.
Or making sure that public sentiment was against using Yucca Mountain for nuclear waste.
Turns out, she now says, neither effort was as tough as trying to get her husband, Ernie, a life-saving transplant.
“What is so frustrating is that so much of this is out of my control,” Johnson says. “I simply don’t understand why people have to fight so hard in this situation. Why isn’t there a system in place that takes care of this?”
My sentiments exactly. In a nation that seldom has a problem finding either the argument for, or the money for, another reason to kill people overseas —- nearly 3 million of us were sent to kill for peace in Vietnam —- we the people have a difficult time making an argument for, or finding the money for, helping Americans through medical crises.
Like thousands of other Nevadans over the years, the Johnsons quickly found out that the one organ that is transplanted in Nevada – the kidney – is not the organ they need. Ernie Johnson, a plumber, needs a liver. Now in end-stage liver disease —- it took a decade for him to become disabled —- he believes he acquired hepatitis C during a transfusion in the years before blood was tested for the virus.
Why doesn’t UMC, which statistics show is one of the best places to get a kidney transplant, also doing liver transplants? After all, Dr. John Ham, the lead surgeon, is trained to do them.
The reason is simple: It would cost another $10 million to get the proper protocols in place.
So what do Ernie Johnson and the other 128 Nevadans waiting for liver transplants do? Well, they check out transplant centers across the country. First, the Johnsons tried California. One center said his $1.5 million insurance cap was too low and another said the average wait for a liver there was 72 months.
More than a year ago, Johnson’s physician said he had two years to live without a transplant.
The Johnsons also looked into a Tennessee center, with a shorter wait for an organ, but they didn’t see how they could live there for months as requested by the hospital. Most centers require people to live in the area after a transplant for follow-up visits.
“I’d be his caregiver and even if we stayed in charity housing at $50 a night we couldn’t afford it,” Peggy Johnson said.
Karen Hess, director of transplantation at UMC, said the number of Nevadans who need liver transplants is probably far higher than 128 but many choose death instead because they can’t afford out of state housing and a loved one taking off work.
Don’t you want to sing the national anthem?
Finally, the Johnsons learned there was a transplant center in Seattle, where they could live at no cost with family. The average wait for a liver there is less than 12 months. So it’s possible Ernie Johnson, 59, may come out of this crisis alive.
But it’s also possible he’ll be one of the more than 6,000 Americans who die each year —- about 18 a day —- waiting for an organ. Nearly 117,000 people are on waiting lists.
Only about 35 percent of Americans register to be an organ donor.
To Peggy Johnson, it makes sense for Americans to follow the lead of Europeans and adopt presumed consent legislation, where a deceased individual is classified as a possible donor unless he or she explicitly objects prior to death. In the U.S., individuals have to opt into organ donation.
Studies show organ donation rates are 30 percent higher in presumed consent countries.
But surveys show only 7 percent of Americans, fearful of losing of liberty, favor presumed consent.
So the 65 percent of Americans who aren’t registered as organ donors can still proudly paraphrase Patrick Henry.
Give me liberty and give me death for my countrymen in their time of need.
Paul Harasim is the medical reporter for the Las Vegas Review-Journal. His column appears Mondays. Harasim can be reached at email@example.com or 702-387-2908.