When a family member becomes the primary caregiver of a relative, what might go unnoticed is the physical and mental health of the actual caregiver.
Oftentimes caregivers find themselves in strenuous situations, having to juggle their newfound responsibilities of taking care of a loved one along with their usual family lives and jobs that don’t stop just because someone has an illness. In these situations, employers supporting caregivers is as important as caregivers supporting the patients they’re taking care of, as a group of panelists discussed at the sixth annual BIO Patient and Health Advocacy Summit in Washington, D.C., this week.
All of the panelists spoke from experience, including Lisa Winstel, COO of the D.C.-based nonprofit Caregiver Action Network. She was the primary caregiver for her mother, who passed away after suffering with a “rare form of a rare cancer” for nine months. Now she’s the primary caregiver of her 85-year-old father, and it was from that perspective that Winstel told a story about how caregivers’ needs can be met by employers.
She had just completed her drive from Frederick, Maryland, to Washington, D.C., one morning when her father gave her a call — which was unusual, because Winstel normally speaks to him every evening. He had called to tell her that he wasn’t feeling well, dialed 911, and was going to be taken to the emergency room. So just as Winstel pulled into the parking garage, she had to turn around and drive home. But when she called to tell her boss the news, she heard a distinct catch in his voice: “So, does that mean you’re not coming in?”
“Employers should have that ‘aha’ moment,” Winstel said. “If we’re there for patients, we have to be there for caregivers,” said Lisa Winstel, COO.
Sometimes that can happen in concrete ways. A dedicated private, phone room, for instance, can help out a family caregiver who needs to call a doctor’s office at 10:30 a.m., because they know if they call at noon, they won’t be able to reach someone during the lunch hour.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
At CancerCare, a nonprofit in New York City that provides free professional support and information to caregivers caring for someone with cancer, that means $14 million in financial assistance over the course of last year alone. But it also means having 30 social workers on staff, as well as providing training for employers unsure of how to talk to or support employees managing both a job and a caregiver’s role.
“We do training on how to speak to people who deal with family members with cancer, and training on how to speak to employees,” said Christine Verini, chief business development officer of CancerCare. “It’s bringing the voice of the caregiver to senior supervisors.”
At EMD Serono, the biopharmaceutical division of Merck, a new program called the Embracing Cares Initiative just launched to help raise awareness of the needs of caregivers themselves. It comes in the wake of a global survey the company conducted of 3,500 people who self-identified as caregivers. Of that number, 20 percent said their careers had been affected; 30 percent said they were experiencing financial distress; and more than 50 percent said that felt severely depressed at one point.
“All of us as caregivers … we also need to look out for ourselves as well,” said Scott Williams, VP, Head of Global Patient Advocacy and Strategic Partnerships at EMD Serono.
Ultimately, employers setting the example in these cases is key. It’s not enough to express that the company supports caregivers without also providing the institutional support.
Or, as Hala Durrah put it: “When I get that call, I need to know you have my back.”
Durrah is a patient-family engagement consultant in Washington, D.C., with her own caregiver story. Her eldest daughter, who’s now living the life of a typical 14-year-old, needed two kidney transplants and then a bone marrow transplant after developing Stage III lymphoma. Throughout, Durrah had to take care of her sick daughter as well as her three other children. Today she works with healthcare systems and organizations to ensure that patients and their families get the support they need.
“We have such a long way to go to support caregivers,” she said. “At its core, it’s an emotionally charged experience.”
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