This photo comes from New York Channel 1. Sorry for the quality. This is some of Puerto Rican leadership announcing an end to the political impasse that has left nearly 100,000 people out of work. Puerto Rican Governor Anibal Acevedo Vila and the Puerto Rican legislature appear to have reached an agreement that will have government workers back on the job Monday morning. Thank God!
I hope that whatever lead to the shutdown in the first place continues to heal, both for the Puerto Rican people, but also because whatever happens in Puerto Rico has a direct impact on the battle for a cure for Hermansky-Pudlak Syndrome. Fact is the syndrome is most common on the island of Puerto Rico, and thus if things are not going well there, the odds of being able to do outreach and get people to travel to Washington to participate in research to find treatments is hindered.
We are in a race to fill this Phase III trial for a treatment for the pulmonary fibrosis of HPS. Getting potential patients to the National Institutes of Health to be screened is a challenge. First you’ve got to find them. Then you’ve got to impress upon them how important this research is, and what it could mean to them and their families. Often people with HPS are completely unaware the disorder could be affecting their lungs. In the early stages it’s easy to pass off the symptoms as asthma, allergies, or just getting out of shape.
And if we manage to get them to the NIH to be screened, they must have lung function scores within a certain range and have no other serious medical conditions that could exempt them. So far we only have nine people in the trial, and we must have 40 to continue. The clock is ticking. Failure to fill the trial could result in losing the funding. It would also set us back years as suddenly the researchers would be skeptical about our ability to fill any future trials. Failure is simply not an option.
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