Avoiding Insurance Woes: Smuggling a Glucose Monitor From Britain
For many of us, the next two holidays are a time for reflecting and being grateful for all the gifts we have been given. Thankful for what we have, thankful for the time we spend as a family, and thankful for what we have received.
Two weeks ago, I gave the fund a cure speech at the JDRF gala in DC. I shared with the audience my family’s history with JDRF and one particular story that has left many people feeling thankful and encouraged. I’d like to share that story with you...
My family’s journey with diabetes started when I was diagnosed Easter weekend 1970. When he heard the news, my father was inconsolable. He was a pilot for TWA, and to help turn his grief into action, my mother suggested that he use his international travels to advocate for diabetes research. Through some friends, he soon met a woman who had started a grassroots project concerning research and needed some help launching the idea internationally.
My parents held a dinner at our house, and among the guests was this gentle, soft-spoken redheaded woman. She chatted with me for a while and eventually she said, “You know, your dad and I are working to find a cure for diabetes, so you won’t have to give yourself shots anymore!” She knew all about boiling needles and glass syringes and using urine tests to determine blood sugar levels, because, like my dad, she had a child with diabetes, too. That woman’s name was Lee Ducat, and her grassroots project was founding the Juvenile Diabetes Foundation, now called the JDRF.
With Lee’s support and connections, my father learned about the disease. He began to look for the best research overseas, talking to doctors and bringing them into contact with JDF. Dad befriended Dr. Bob Tattersall from England, who would become my father’s resource for finding the most promising researchers on the globe. Dr. Tattersall shared his knowledge with my father -- and eventually that relationship changed all of our lives.
In 1979, my dad became the director of a camp for children with diabetes and Dad met a boy from Philadelphia, Jimmy Pluards, who had been having trouble managing his diabetes. Jimmy had been making weekly trips to the ER, many times in DKA, and often unconscious. My father knew that doctors in England were using a new technology that might help Jimmy better control his blood sugar levels.
So, he called Dr. Tattersall in London, who told him that it was true: doctors all across England were using a new technology that tested blood instead of urine, and the data was clear, much better control! By using blood, it gave immediate real-time information versus urine, which could give results as much as 6 hours old. The device had been available to the British public and it was getting rave reviews. This new invention was called a “glucometer” -- a blood glucose meter.
While people living with diabetes in Britain were experiencing one of the great transformations in diabetes care, here in the United States, you can guess how the FDA was responding to this new technology ... the FDA was crippled with inaction.
The FDA bureaucrats doubted the benefit of such a device. American pharmaceutical companies were interested, but because of the FDA’s lack of approval, they were in no rush. And so the new technology was simply not available in the U.S.
To my father, the idea of waiting for the bureaucracy was not an option, as long as there was a child in need. Soon enough, with the blessing and enthusiasm of Lee and Jimmy’s doctor in Philadelphia, my father and I boarded a plane to London to go and pick up a meter and bring it home. In London, we stayed for a couple of days meeting with Dr. Tattersall to learn how to use it. My poor dad! Every time he suggested I try it, I flew out of the room! Eventually, though, he had blood-testing supplies and a good understanding of how to use the device, and we headed for the airport.
The trick was to get the meter back into the U.S. without it getting confiscated in Customs. So Dad put on his TWA uniform hat and overcoat and we glided through Customs with the contraband nestled safely in his flight bag.
Our friend from camp, Jimmy, was able to use the glucometer right away, and the data gained from Jimmy’s case came to be very important. With the meter, Jimmy’s weekly ER trips disappeared and his health and ability to stay in school dramatically improved! Word spread and soon enough, a vast network of JDRF parents put pressure on the FDA to make the blood glucose meter available in this country. The FDA agreed and the pharmaceuticals stepped up to the plate. Today, you can buy a glucometer in every drugstore in the U.S. without a prescription. Most people with diabetes use their meters 6-8 times a day and I can’t imagine my life without it! Approving the technology in the United States was a historic step for people with diabetes.
The next step in our journey in living with diabetes is the development and approval process for the artificial pancreas. The artificial pancreas is like an insulin pump and continuous glucose monitor working together. In other words, it is a mechanical way for a body to monitor its insulin needs and then use a complex mathematical algorithm to properly dispense just the right amount of insulin. The artificial pancreas would drastically decrease the chance of complications and more importantly, it will help people with diabetes stay far healthier until the day a cure is found.
If you think about it, the artificial pancreas in 2008 is the equivalent to what the glucometer was in 1979 - the next giant leap in our journey to improving the lives of people with diabetes. The artificial pancreas is in human trials now.
To quote Emerson, "One of the most beautiful compensations in life... we can never help another without helping ourselves."
Happy Thanksgiving and don't forget to test your blood sugar!