Nonprofit supports families of NIH patients in clinical trials
March 25, 2020 12:30 pm
6 min read
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The National Institutes of Health is one of the crown jewels of American medicine. Among its services are clinical trials for patients with no where else to go. Often the patients have families for whom the trial is no less a hardship. That’s where the nonprofit Friends of Patients at the NIH comes in. Director Heidi Williams joined Federal Drive with Tom Temin for more information about the organization, which is a recipient of Tom’s upcoming Motorcycle Ride for Charity.
Heidi Williams: Thanks for having me, Tom. It’s good to be with you virtually.
Tom Temin: Friends of patients at the NIH. Tell us more about the organization.
Heidi Williams: Well Friends of Patients at the NIH, or Friends at NIH for short, has been around for over 36 years. We’ve been a small nonprofit located within the clinical center in the social work department in the heart of the hospital. We’ve been there to help cover patients needs. It grew gradually from a need to help patients who had nowhere to sleep. We were finding patients sleeping in their cars or in a chair alongside our their caregiver, or the loved one would be sleeping alongside the patient in their room. It was becoming difficult for patients to stay in the clinical trials because it couldn’t cover their expenses back home. So as you can imagine, parents have a sick child, they want to be there. They’re flying in or coming in from all over the world, or all over the country, and they have to leave their jobs behind and make that difficult decision of whether to support their family back home or stay with their sick child. Or a spouse is going through cancer treatment or a bone marrow transplant and needs a caregiver, needs someone to be able to get them in and out of bed, get them what they need. Stay close by. But yet they’re worried about being evicted from their home. We’ll step in and will help out the social worker common and talk with us. We try to find the best options to help families, whether it’s paying for their rent back home or their utility so they can keep their household going, or flying in a caregiver so that they can be with the patient. One of our biggest programs that we started the last few years was local housing. We were finding that transplant patients need to be in the area for at least 100 days post transplant, and they were having a really difficult time finding affordable housing or rooms in the Bethesda area. So we’ve partnered with some developers, and we have furnished apartments that are available for the long term period that they need to stay, and we provide grocery cards and give them a place to rest and recover and be able to get back into the clinical center for their follow up.
Tom Temin: So it’s safe to say that you really provide services both for the patients themselves and also the families and others affected in their immediate surroundings.
Heidi Williams: We do. We do, so it’s not just affecting or helping the patient. The family needs help in the family needs support. We started programs even for patients who are in isolation and can’t leave their room. We haven’t Arts and Crafts Program where we have crafts that come in to help keep their minds active. We have outings, just dinner and a movie for caregiver who’s been sitting with the sick loved one for days, weeks on end, and they need to get out of the hospital for a bit. So we provide some outing just to give them a break from the hospital. So different emotional support systems that are needed when people are going through difficult times.
Tom Temin: I guess in some small way, it also helps the NIH staff itself caregivers, knowing that the holistic parts of the person’s life are being attended to in some way.
Heidi Williams: Oh, absolutely. And all of these smaller programs that we’ve developed through the years have all come through our conversations with social workers and the nurses and the medical teams. And this is where we’ve developed, oh we need to give patients or a caregiver a little bit of time away from the hospital. So we’ve been able to partner with local movie theaters and restaurants and be able to give them that type of respite. We’ve have dinners on Sunday evenings when patient and caregiver arriving for the first time, and they have a warm meal. They’re coming from all over the country, have nowhere else to go and are always so grateful to have a warm meal to come home to and get their week started.
Tom Temin: Roughly, how many people do you think you serve in a given year?
Heidi Williams: We served between 75-85 patients and then with their family members somewhere around 1200 when we include all of the outings and the different programs that we provide.
Tom Temin: And where do most of your funds come from?
Heidi Williams: All of our funds come from individual donors and corporate sponsors who attend our events or our annual sponsors. But it’s a difficult time as you know these days and our events that we had planned for the spring are being postponed. So it’s become a little difficult for 2020 but all of our funds come from donors and sponsors.
Tom Temin: I imagine the pace of activity on the NIH campus has probably accelerated though too these days, huh?
Heidi Williams: It is. It ebbs and flows. Qith what is happening now with this pandemic, I think it’s shifted to to the type of treatment, some has been held off for non essential treatment. But they are focusing on obviously getting through this pandemic and making sure everybody’s safe.
Tom Temin: And have you ever had a motorcycle ride to raise funds for the friends?
Heidi Williams: We have not. This is very exciting. So when I heard about it, and I know that Dr. Collins is a rider, my husband loves riding motorcycles. We have several friends who do. So I thought this was a great idea, and I think it’ll be a beautiful day to be able to ride out in the fresh air and enjoy it and help raise some funds for our charities.
Tom Temin: While we have you. Tell us a little bit about yourself. How did you come to this position?
Heidi Williams: I’m a lifelong Montgomery County resident, and I grew up in the area. Very close friends a dear friend of mine was on the board of directors for friends at NIH many, many years ago, and I started volunteering. I’ve been a community volunteer for many years and help raise funds for local charities. And she had mentioned that they were in desperate need of a new director. So 13 years ago I applied for the job and just fell in love with what I was doing and just saw that there was so much potential to do so much more. So I’ve been there for 13 years, and I’m really proud of the programs that we’ve been able to grow and all the thousands of people that we’ve been able to help and support.
Tom Temin: Heidi Williams is CEO of the Friends of Patients at the NIH. Thanks so much for joining me.
Heidi Williams: Absolutely, Tom, thank you for having me, and I’d look forward to our ride coming up.