Organ transplant system desperately needs improvement

Parents want a lot for their children. But for parents about to have a baby, they really only want one thing: For their child to be born healthy. My wife and I were no different.

So when the doctor came into our hospital room as we were getting ready to take our first baby boy home and gently broke the news that something looked wrong in our son’s blood test results, we felt the world shift under our feet.

It would take weeks of tests and an exploratory surgery when he was five weeks old to diagnose him with biliary atresia — a rare congenital defect in which the bile ducts don’t form properly and bile backs up and damages the liver. We were extremely lucky the doctors caught it early. Left untreated, biliary atresia is fatal. It is also the number one cause of pediatric liver transplants.

We watched our tiny baby hooked up to a ventilator in the ICU after a surgery to remove his bile ducts and gallbladder and connect his small intestine directly to his liver (a procedure designed to buy time and allow babies to hold on to their native livers as long as possible) and tried to wrap our minds around what came next.{mosads}

Fortunately, the intermediary procedure was a success, and today we have a funny, joyful two-year old who, but for regular visits to the (excellent) transplant clinic at Georgetown Hospital and a few medications, lives a completely normal life.

Yet, the prospect of a future liver transplant looms large. Normal toddler ailments like fevers or a stomachache cause my blood to run cold (which I’ve learned is not just a figure of speech). Fluctuations in our son’s routine lab tests could be nothing, perhaps a minor infection, or it could mean that his liver is beginning to fail, and we must confront the reality of putting him on the transplant list to wait for a new liver.

It’s the waiting list, not the transplant surgery itself, that often most concerns patients and their families waiting for an organ. 

Since the first kidney was successfully transplanted in 1954, doctors and scientists have done miraculous work to make organ transplants a life-saving option for thousands of people every year. The one-year survival rates for many types of “routine” transplants, like the liver, kidney, and heart are above 90 percent. But first you have to get the organ.

According to the United Network for Organ Sharing, the federal contractor overseeing the organ donation system, 113,000 Americans are waiting for a life-saving organ transplant and 20 people who are waiting die every day or are removed from the waiting list because they’ve become too sick to receive a transplant.

It doesn’t have to be that way.

While 95 percent of people support organ donation, one problem which prevents many Americans from being able to make this life-saving gift is an inefficient system of 58 government-granted monopolies called organ procurement organizations (OPOs) which work behind the scenes to coordinate organ recoveries from deceased donors.

New research funded by The Laura and John Arnold Foundation shows that many OPOs are rampantly underperforming, recovering only as little as 30-40 percent of potential transplants every year. If the industry were better functioning, the waiting list for liver transplants could be eliminated entirely within just two years.{mossecondads}

The problem, largely, is lack of accountability. OPOs are allowed to interpret and report their own performance metrics, resulting in data that even their own oversight bodies admit, in a recent report by the Washington Post, are “not rigorous enough to hold OPOs accountable.” As a result, in the almost 40 years the industry has been in operation, no OPO has ever lost its government contract.

As the parent of a child who may need a liver transplant one day, it is mind-blowing to see research that suggests there could be more than 7,000 additional liver transplants per year with a more efficient system — and heartbreaking to know that this poor performance has been allowed to persist for decades.

Fortunately, there are solutions. The U.S. Department of Health and Human Services (HHS) needs to look out for patients, and change the metrics by which OPOs are evaluated, with a focus on creating objective, verifiable reporting mechanisms which OPOs can no longer game.

This week, several major patient groups wrote to Seema Verma, the Administrator of the Centers for Medicare & Medicaid Services, asking that “this Administration… become the first to enable meaningful OPO performance accountability.”

Improving the inefficiencies of the current system could not only save thousands of lives, but could also save patients and their families the crippling anxiety of not knowing whether or not they’ll get the organ they need.

The clock is ticking for thousands of people. There’s no time to waste.

Sarah Longwell is a Partner at Berman and Company, a Washington D.C. communications firm.