By Candace Sindelman
The Sag Harbor summer resident, co-chair of the Tick-Borne Disease Alliance (TBDA), and victim of Lyme disease talks about the “TBDA Diagnostic X Prize,” a global competition to develop a fail-safe diagnostic tool for Lyme and other tick-borne diseases.
What inspired the TBDA to team up with the X Prize Foundation?
One of the biggest challenges for patients with Lyme disease is lack of a good diagnostic tool. As a result, people don’t get diagnosed as early as they should. We want to eradicate the disease and promote awareness, and through better diagnostic tools make a big dent in relieving human suffering that comes from the disease. We have been working with the X Prize foundation for about a year. They were so successful with their contest to jump start the commercial space industry, taking a small amount of money and leveraging it. They now have a focus in solving other world problems. Speaking to them they recognized how much suffering and confusion has come out of this disease and developed a competition. The winning prize could be $5 million, $7 million, 10 million, I don’t know yet. But it will be a large entrepreneurial opportunity and a way [for the winner] to harness the power of the market. Dozens have already contacted us to participate since they all think they have the greatest test since sliced bread. It’s terrific, it’s great competition.
What are the challenges in constructing a competition like this?
Defining what the competition is. In our case approximately 30,000 people are being diagnosed each year in this country, and a lot more cases aren’t reported. There’s a common belief in the Lyme community that a lot more people are sick than are captured by current testing technology whether due to an individual’s immune response or time the test is given. You figure the test that wins the competition will not only capture the same 30,000 but also all the other people that are ill and not being treated.
The second hurdle is to come up with a test that has the benefit of being tested on a lot of samples. One question is how do we get enough samples of the cohort population to test diagnostic tests?
The third hurdle at the end of the competition is that the best practices are used and there is the highest quality sample set. It’s critically important for the test to work, but that is not enough. The test should work for the masses, be cost effective, accepted by the medical community and replace the current government standard for testing that is accepted by insurance. It’s ambitious, but you have to think big.
Why do you think there is less awareness about Lyme disease than other diseases?
There is often a West Coast perception that this is an East Coast disease and that is not the case. I don’t know why there hasn’t been more awareness, and that is a big part of what the Tick-Borne Disease Alliance is trying to do. The X Prize Foundation markets the issues and brings a level of credibility. I’ve been contacting major news networks and people I know. It’s been challenging because a lot of the stories have been done before. But I think as more people are diagnosed with the illness we’ll start to hear about more stories.