The impact of innovative medicines: A caregiver's perspective

PhRMA regularly highlights how scientific and medical innovation can help solve patients' toughest challenges. As someone who has had family members impacted by serious illness, I know that biopharmaceutical progress in recent decades has improved patient outcomes immensely, helping people enjoy healthier, more fulfilling lives. I also recognize that innovative treatments can improve the lives of yet another crucial, but often overlooked stakeholder: the caregiver.

Caregivers are critical to helping patients navigate their treatment journey and manage the wide range of complex needs they face. Caregivers can be friends, neighbors, or family members — anyone who provides care to those who need help. The role of the caregiver can take many forms, but one thing is consistent: it is time-intensive, demanding and can feel like a full-time job.

I always knew I’d be a caregiver to my family (my parents reminded me from a young age that they’d look to me to fill the role). I was eager to support my family — my younger sister has Down syndrome and my father was a leukemia survivor — but I didn’t fully grasp the intense responsibility of caregivers until October 2005, when my father lost his battle with melanoma.

I decided to move back to California to serve as a full-time caregiver when doctors told my father that his melanoma had spread. I had just started a career in DC with a job on Capitol Hill and was incredibly fortunate to have had a boss willing to help me balance professional and personal responsibilities. Had I not had an understanding boss and office, my move could have been permanent and my career in DC could have come to a premature end.

And while I was ready to assume the caregiver role more fully, I’d always expected to feel more like an adult before that happened.

For nearly 20 years, I have supported my sister and mom navigate the health care system from across the country. These responsibilities range from managing communications with providers, figuring out travel logistics for my sister’s care, navigating countless administrative obstacles and making decisions about my sister’s treatment requirements. English is my mom’s second language, and the siloed health care system makes it increasingly difficult for her to navigate. At times, I have even needed to educate actors within the health care ecosystem — such as insurers, pharmacists and physicians — about the nuances of my sister’s insurance coverage and care regimen. I’m lucky to have a job through which I’ve cultivated a large base of industry knowledge that can help my family navigate these barriers, but I know many patients don’t have a similar support system and suffer poorer outcomes as a result.

While I wouldn’t have it any other way, caregiving is a time-intensive, emotionally demanding role. Trips home to California don’t always feel like vacations, and there’s generally little time for self-care. I know I am not alone in feeling this.

Countless caregivers across the country play a key role in the delivery of care, and their contributions are too often overlooked. Their actions are a reminder not only of the many stakeholders that come together to address unmet patient needs but also of the reality that alleviating patient burden can mean alleviating caregiver burden, too. The more we can do to develop new medical innovations — and crucially, expand access to them — the better we can improve the quality of life for patients and their caregivers in ways that aren’t always apparent.

For its part, PhRMA will always advance policies that bring forth a robust pipeline teeming with potential treatments and cures. For more information on how the biopharmaceutical industry is working to advance innovation, click here.