Thursday, November 12, 2015

Changes underway at NIH – new path toward the cure

As many of you know, I just returned from the National Institutes of Health. During my visit (with my good friend Jessica) we were able to have a long talk with Kevin O’Brien, the nurse practitioner that takes care of patients with Hermansky-Pudlak Syndrome or HPS. He asked us to convey a message back to the HPS community. We are, of course, happy to help.

In the past HPS patients have grown accustomed to being inpatient at the NIH (especially the HPS adults). There were reasons why this was done in the past. To be honest, I used to like being inpatient. It gave me one place to put my things. There was no schlepping things back and forth. It was easier to get some work done at NIH when you have a base of operations, sort of speak, and then came and went to tests as needed. For most of us, however, there really isn’t a medical reason for being inpatient. We know much more about HPS and thus we don’t generally have as many tests or need as much observation.

There are practical reasons for the change as well. When we are inpatient, it costs more to the HPS research budget. It means more work and more paperwork for Kevin and Dr. Gochuico who care for us. That extra time is time they are not spending publishing some of what we have learned from HPSers in the past, or on working on lab projects for the future.

We need the research to move forward. We need to use our resources as wisely as possible. We need more bang for those very limited bucks.

Visits will be shorter. They might seem less personal. It will look much more like going to see a doctor for a visit than going to the hospital.

This change isn’t going to be easy, especially for those of us accustomed to the royal treatment at NIH. Kevin is not going to be able to find medical issues you might not have been aware of and run extra tests or help with extra treatments outside of the narrow scope of the current research protocols.

Kevin, and the docs, are worried about how the HPS community is going to take this. They are worried the changes might be perceived as a slight – as though somehow the NIH doesn’t need us or love us as much as they once did. People used to having Kevin at their bedside several times a day might feel ignored if they see him only briefly during their stay.

It isn’t a lack of love! It’s a need to do more for us. The NIH, just as the HPS community, is very, very saddened by all of our losses this year. Unless they can find more money or more staff, (something that won’t change in the government system quickly) they’ve got to find other ways to make more time and free up more funds.

If Kevin doesn’t have to care for patients in the inpatient unit, but rather at the day hospital or in the clinic, then he will have more time to work on academic papers about HPS. We really need some of those papers!

So, let’s band together – the NIH and us, the patients, to push forward. Let’s honor the memories of our recently lost friends by being research warriors. Many of them were active participants in the research. I know all of them would have wanted a better life for those of us left behind fighting this fight. They would have wanted a better life for the next generation of HPSers coming along.

Imagine a day when having HPS means something totally different than it does now. Only we can make that happen.

It will mean some rough trips as the kinks get worked out. Please reach out to the HPS Network and the HPS online community to find ways to strategize any challenges and make this happen.

The future is in our hands.


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