On Rare Disease Day 2019, our team had the honor of speaking with Grace Whiting, president and chief executive officer of the National Alliance for Caregiving. Her compassion and professional energy to help caregivers is profound. We present the unedited words Grace shared with us here.
“I started my career in Washington doing regulatory and communications work for healthcare organizations, and I moved to the caregiving side because it struck me that we rely on caregivers to provide long-term care support in the US completely unpaid. All of these conversations about value-based healthcare or about meeting the triple aim of health reform didn’t make any sense without that context of the caregiver.”
The work of the National Alliance for Caregiving
“Now that I am working in this space, and I’ve had the honor of taking over the National Alliance for Caregiving from my predecessor and organization founder, Gail Hunt, I realize how many people’s lives are touched by caregiving. Everyone from my Uber driver to the store clerk to people in my own life will say, ‘I never realized that I am a caregiver.’ And so being able to do research, advocacy, and global advocacy and engagement has been tremendous and a great chance to get at some of these bigger healthcare questions.
The National Alliance for Caregiving is a non-profit coalition that represents about 60 organizations: federal agencies, not-for-profits, and corporate partners who work on issues related to unpaid family caregiving. We have three buckets of work: public policy research, international and global engagement, and we also do advocacy in the states and on the federal level.
One of the challenges in caregiving, is that there are historic silos related to services and support for families. We see on the aging side – those who are doing elder care. Then we see on the disability side, support for families who are caring for someone with cognitive issues or IDD – or intellectual and developmental disabilities. But what I’ve noticed as we attend these various national and global initiatives related to caregiving, is that there is very little support for rare disease families. They often slip between the cracks.
Because of that, we’ve decided to make rare disease and other types of unmet needs a priority for the work we’re doing and to try to bridge some of the gaps in caregiving services, supports and information.”
Care without obstacles
“One of the biggest needs in the rare disease community for families and friends is help with grief and understanding the disease. We saw in our study that three out of four people experienced a sense of loss for what their life could’ve been or what the person they loved, that person’s life, could’ve been without the disease. Less than half said that caregiving had a positive impact on their family.
At the basis of this is the idea of family and social cohesion. People need to be able to care for each other without obstacles from their insurance company, from their healthcare provider, from their workplace. I think many families, particularly in rare disease, need to be aware of what supports do exist and also how to navigate the complicated grief that comes with the uncertainty of prognosis and sometimes an uncertain journey over the lifespan of the disease.”
The report on rare
“In 2017 we released report Rare Disease Caregiving in America, which was done in partnership with Global Genes, and a number of industry and foundation partners who are committed to this issue of caregiving. Yours was one of the first companies to say that they thought the project had merit and to give us a grant that allowed us to kick off most of the work. We had more than 1400 caregivers participate in the study, caring for people with 400 different disease states. We were able to really identify what sets rare disease caregivers apart from other types of caregivers.
One of the things that struck us was the close relationship of rare disease caregivers. These are people who are caring for a close friend or family member. They often live in the same place, and there’s a ripple effect, so that you see, in many cases, other children in the household providing care, other neighbors providing care. So really, there’s this constellation that emerges.
The other thing that marks rare disease caregivers is that they are the true experts in the disease, because they constantly have to educate providers and others about what the condition is.
We have a long way to go in terms of public conversations about caregiving and rare disease. You know, a couple years ago there was a news article where there was a young girl that had a rare disease, and her mother was crowdfunding to be able to afford access to care, essentially. Because her daughter didn’t look like your typical kid who’s able-bodied, she became a meme. People started to make fun of her daughter, and it kicked off this whole national conversation. I thought about the difficulty in being able to care for someone you love and have to constantly deal with the stigma and lack of understanding. You also see people who have sort of invisible diseases — people are dealing with something that does limit their ability to engage in activities of daily living, and yet, because it’s not visible, people don’t take it seriously.
One of the things the National Alliance for Caregiving does is address the misconception that caring for someone is just something that happens in your family; it’s private, we don’t need to talk about these issues publicly. In the aggregate, if we count up every caregiver in the United States, we estimate that there’s about 44 million people. AARP, who’s worked with us in much of our caregiving work, said if you replaced every one of those people with a direct care worker, the value would be 470 billion dollars a year.
So, we’re talking about something that is a public health issue that we should be open about in the same way we are about maternal health, about exercise, and other public health campaigns. I think there’s also a piece here to celebrate, that we’ve been framing our advocacy work in the sense of people have a right to care for the ones that they love. People have a right to not have to choose between their jobs and being at the bedside of someone they love who’s dying, or to have to choose between all social interaction and taking care of this person.
So, I think there’s a lot that can be done for people to reframe it and talk less about burden of disease and more about the social cohesion, the family unit, the wonderful, sacred nature of caregiving, and being able to be there for people you love.”
Advice to new caregivers
“If you’re starting your caregiving journey, the first thing to do is just accept. Accept you’re going to have complicated emotions. That’s something we saw in our research. A lot of people felt a sense of pride, they felt closer to the person that had the disease or condition, but they also felt angry, maybe a mix of guilt and shame. So the first piece is to accept it, to say it’s okay that this is a complicated situation.
The second is to identify what supports you have available to you. Patient advocacy groups like Global Genes, RDLA, EveryLife Foundation, can offer a lot of helpful resources for people who are in the same situation.
The third would be to reach out and connect with others who have been through this before. You don’t have to do it alone, and that support system will be a key part of being able to move forward in a positive way.”
Just take a break.
“There’s two things that I hear caregivers say, ‘Gosh, I wish people would stop saying that.’ The first is the idea of respite care, and people saying, “Well, just take a break.” Usually, this gets sort of synthesized down to smell a flower, walk your dog, take a walk, and that’s not particularly helpful advice. The issue around respite is that people need someone who is trained in that type of medical nursing care who can actually step in to the shoes of the caregiver, so the caregiver can feel comfortable leaving the home or leaving the environment where their person is and going out to take an actual break. There’s a lot of innovative programs. Summer camps, for example. Sometimes, community-based organizations have that, where you can have trained people look after the person you care for.”
Identifying as caregivers
“The other thing I notice is a movement to try to get caregivers to raise their hand and say, “I’m a caregiver,” and to self-identify. But when you look at the research, about half the people feel like they had no choice in taking on the role, and they don’t want to self-identify because it will eat up the other identities they hold in their life. They want to be mom, or wife, or brother. They don’t want to be caregiver, and I can count numerous times where people have said, “Nobody wants to be a caregiver.” Recognizing that and thinking about, “Are there ways that systems can invite the caregiver in rather than forcing people to raise their hand?” I think is a very critical approach to making programs that will actually work.”
“One of the impacts we see on families who are caring for someone with a rare disease is that they often don’t take the time to take care of other pieces of family life. That could be anything from advance care planning to taking care of other people who are in the household. We hear many stories, as we’re sharing findings from the report, about parents in particular, who are concerned about other children in the household, who maybe didn’t get the same attention or time as the person with the rare disease.”
Caregivers’ role in development of therapies
“One of the exciting things in the biotech industry right now, is that the FDA is thinking about how patients and families can engage in the drug and device development process. At the National Alliance for Caregiving, we’ve partnered with a number of organizations to identify how caregivers fit into the clinical process. I would encourage the scientists and innovators to think about advocacy as not just something soft.
It’s not just about awareness, but how do we actually carve out a role for caregivers in the drug development process? What type of data can we accurately collect from a caregiver? Should they be serving as surrogates or proxies or observers? In that context, is there a way that we can identify and capture data about the impact of the family, not just the impact of the disease, not just on the family alone, but on the caregiver specifically who is there side-by-side with the patient?
There’s no formal role right now for caregivers in the clinical trial process, and we went and met with the FDA, and we were surprised. We had people from more than five different FDA centers, and what shocked me is that everybody had a different definition of caregiver. When we held our multi-stakeholder summit, we had patient advocacy groups in industry, and it was the same thing.
So, in many ways, it’s like the Wild West. We know that caregivers are there, we know they’re helping out with medication management, but we have not defined a role for them. We don’t understand the impact of the caregiving relationship on the safety and efficacy of how a drug is delivered, and we don’t really understand the larger economic impact of if it’s an infusion therapy, Mom’s got to take off work to drive you to infusion therapy. If it’s an injection, somebody needs to show my brother how to do it. Those types of guardrails and the balance of what the person wants versus the caregiver, that’s all new territory.”
Isolation and unity
“Rare caregivers often feel very isolated, and part of the challenge, and all caregivers really, sometimes friends and family and the communities don’t understand the nature of any type of disability or health condition; people get scared and they don’t know what to say. They think, “Well, not saying anything is better because I don’t want to say the wrong thing, so I just won’t say anything at all.” That leaves people very, very isolated.
One of the things we want to do at the National Alliance for Caregiving is say, look, we’ve got a lot of caregivers across a lifespan, and although the individual conditions are different, and you need specific guidance about the individual’s condition — a dementia caregiver who needs time off to go sit with Mom at a facility is facing the same issue in the workplace as the new mom who has a child with a rare disease and needs to go to a doctor’s appointment. They both need workplace flexibility, and there are so many spaces in caregiving where the intervention would be the same, where the impact on families and how we navigate these relationships is similar, that we want to bring those folks together in the policy side, on the research side, and identify where we can share.”
The opportunity to support rare caregivers
“As a company, you have been a leader in working on these caregiving issues in the rare disease space. Part of that is by providing grant funding to understand the social care side of healthcare. The other thing is just the engagement and the excitement around caregiving. I was so moved to see, at Rare Disease Day, a room full of scientists and innovators who were there to celebrate individuals with rare disease and their caregivers, and who were interested in learning about how to better create medicines for these groups. I think building on that excitement and thinking about how you can fit the patient voice and the caregiver voice into the drug development process, whether it’s at the beginning all the way through phase three trials, is the next step. Take that excitement and bring it forward into defining these clear roles so that the patient and the caregiver have a seat at the table as well.”
“If I had a magic wand and I could change the world for caregivers, I would have us be in a society where you can care for someone you love without having to worry about going broke or losing your job or giving up the other things that bring value to your life, but instead, our society would recognize that caring for someone you love is a fundamental right, that if our healthcare system is asking us to provide unpaid care, they should do so with training, support, and assessment, and that we should value the fact that individuals want to give so much of themselves to support people in their lives. That should be a celebrated, exciting, beautiful thing, and that we should migrate away from talking about it as a stressful strain on the family and talk about what’s really going on, this cohesion at the micro-unit of our society.”