Chris Ojeda is a full-time caregiver for his son Billy, who has a rare terminal disease. Chris actively participates in online groups set up to support patients and caregivers, sharing his knowledge to support other parents who are on the same difficult journey.
We spoke to Chris about his experience of his son’s diagnosis and participation in clinical trials, why he’s passionate about supporting parents on the same journey, and why advocacy is crucial in supporting patients and caregivers through treatment.
What has been your experience of your son’s participation in clinical trials?
My son was diagnosed in 2016. He has a terminal disease, so there is no cure. It was emotionally devastating when we found out. For the first two years, I thought I would never smile again. We decided early on that, because it was terminal, it made sense to take the risk of clinical trials. I gave up work and since then, my whole role has been caregiver for my son. In the last five years, I’ve been on 163 flights in the battle for his life.
We did a lot of research around which clinical trial to participate in, but ultimately there’s no way of knowing whether you make the right decision. We chose one of eight or nine trials available, and if I didn’t make the right choice, I won’t know until years pass. Maybe there will have been no good choices because they all failed. Billy’s first clinical trial was cancelled because it didn’t work, then we enrolled on a second.
“If you or someone you love is sick with a rare disease, if you can get to the United States, it’s probably the best country to be in. There are more clinical trials here than in any other country.”
I will always say to people, if you or someone you love is sick with a rare disease, if you can get to the United States, it’s probably the best country to be in. There are more clinical trials here than in any other country. If you’re in the US, and there’s a trial at 15 universities, and you’re willing to go to all 15, apply to them all. If you just focus on the one that’s close to you, they may have a big queue, and you may never get called.
I was called from the University of Florida, on the other side of the country. The coordinator asked me if I knew that UCLA and UC Davis were going to run the same trial, and I said: but you’re on the phone. She said to me, you’re gonna fly a lot, and I said if you will have me, I would fly to the ends of the earth for my son. I won’t miss a single appointment. So, that’s what we did.
What were the biggest challenges you faced in terms of clinical trial participation?
Clinical trials often involve commitment of a lot of time, and that has been the case for us. I have three kids. When my son was diagnosed, my youngest told me that she never sees me anymore, and I felt horrible. I think the hardest challenge for families that have multiple children is making sure all your children feel like they’re equally loved, they’re equally important, and that you would do everything and anything for each one of them.
There are a lot of practical challenges too. One was that the medication that Billy needed had to be stored at 2-8°C, otherwise it was ruined. Managing this delicate temperature range creates extraordinary demands and quite a bit of stress. Hotel refrigerators are very pedestrian and unreliable, so there is a constant babysitting and adjusting. And flying back and forth from the trial site is a full day, encompassing multiple planes and long drives. One of the first things I did was buy a $3,800 refrigerator with exact temperature control because I was not going to take a chance on the medication.
Another challenge is that because of travel, the kids miss a lot of school. We have to make it up either before or after, and it’s hard emotionally too because they miss out on stuff like parties and field trips.
Why did you choose to become a patient advocate?
I’ve been through a lot of dead ends, and I’ve worked out how to deal with a lot of different things from insurances to government support. That’s a lot of work. You can do a lot of research, speak to a lot of people, and just go in circles. With the knowledge and experience I have, I know I can help a lot of parents.
“To have a child with this disease is an incredibly hard journey. On top of that, to then have all the hassle of fighting through medical insurance and government bureaucracy – that’s something I don’t want other parents to have to deal with.”
To have a child with this disease is an incredibly hard journey. On top of that, to then have all the hassle of fighting through medical insurance and government bureaucracy – that’s something I don’t want other parents to have to deal with. In my patient advocacy work, I only focus on the disease my son has. I feel like that’s my calling. I have a heart for other parents that are on the same journey my wife and I are on.
What type of work do you do as a patient advocate?
I’m trying to do different things for the community. I participate in online dad groups where we often chat daily. I also participate in ‘Cheers & Beers’, a virtual private social for dads conducted over Zoom. These are wonderful channels where I can not only provide help with a number of issues but also offer support. I also do a lot of one-on-one work, helping parents tackle insurance challenges which are common in rare diseases.
Now I’m trying to do videos focused on all the different things we deal with. From accessibility to taking medications, to the type of special needs seating you have in school and dealing with the school districts. I want to start a series where I’m interviewing parents and children, and sharing that with the community. I don’t tell people what to do, I just share how I did it. I’m not a doctor. I’m not an expert. I’m just a parent who wants to help other parents.
Why do we need more patient advocates?
When people think about clinical trials, there is a lot of fear. I’ve even had friends say some pretty harsh things, like: “This is a horrible thing you’re doing, making your son a guinea pig.” But when you engage with the pharmaceutical companies, when they put on events and have speakers, they’re able to answer your questions in person. They can step aside from the research and jargon, and speak in terms that parents can understand. Engaging in this sort of thing helps people connect, and get past some of their barriers and biases.
There are a lot of parents out there who are researchers. They want to figure everything out and look at the documents. I’m like that. And some parents are very scared and concerned and just want to do the right thing for their child. Any decision on this journey is excruciatingly painful and heavy, it weighs on your soul. It’s something you contemplate for months. Even after you decide to go a certain way, you still feel the weight of it over you. You’re always wondering, did I make the right decision? Attending webinars, hearing people speak in person can be educational, and it helps people put faith in the pharma companies.
What would you say to encourage more patients or caregivers to step into patient advocacy roles?
You can step into patient advocacy right away. You don’t have to wait until you’ve figured out so many things in your own process and journey. Everybody can use emotional support. If you have somebody in your life that’s suffering, or they’ve missed out on things they could have done in life, and they will never do them, there is a level of grief. We grieve because we love.
And so, from the very beginning, you can help other people just by sharing. Even though you might feel like you’re just trying to survive, or you’re overwhelmed, when you share and talk to other people, you feel better because you have spoken about it and let it out. And people will feel encouraged that they aren’t alone.
“You can step into patient advocacy right away. You don’t have to wait until you’ve figured out so many things in your own process and journey. Everybody can use emotional support.”
People ask a lot of technical questions about clinical trials and particular drugs, about universities and pharmaceutical companies. But they also express a lot of emotional need. I see many parents step into that role. They’re providing encouraging words, uplifting words, they’re reaffirming it’s okay to feel a certain way. For example, some parents feel guilty about some of the thoughts they have. I hear a lot of parents say it’s hard for them to see other kids, like a nephew or a niece, doing so well. That’s one area people can always step into, sharing their own experiences to help reassure others.
How can people get started in patient advocacy?
As well as getting involved in patient communities online, a lot of foundations have specific advocacy roles. There are also a lot of roles where you can participate indirectly by raising money – you don’t have to say anything, and you don’t have to do any research. We’ve raised about £10,000 which went towards funding the foundations’ work with the pharmaceutical companies.
I think though, the most important thing is that if you have some kind of knowledge and experience, you can make it easier for other parents who are going through the same journey.
We’ve been working with Chris to support him and his son on their patient journey.
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