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Unpaid Caregiving: A Growing Healthcare Burden Requiring Societal Intervention

by Bailey Amber
written by Bailey Amber

Chances are, at some point in each of our lives, we will need to care for a loved one impacted by illness.

Unpaid caregiving has become one of the most important social and economic policy issues worldwide. Here in the US, about one in five Americans serve as unpaid caregivers to loved ones, and the reality is that many of these caregivers also need care themselves. However, caregivers are often so focused on the responsibility of caring for others that they have little time or thought for themselves.

According to the Global Carer Well-Being Index, a survey of more than 9,000 caregivers worldwide released in 2021, 89 percent of caregivers said they put the needs of those they are caring for over their own; 55 percent said they are not getting enough sleep; and 45 percent said they are exercising less than they were before the pandemic.

In addition, the pandemic dramatically exacerbated and accelerated the pain points of unpaid caregivers. While caregivers weren’t alone in experiencing 2020 as a highly emotional and unstable period, they faced unique pressures, demands and time commitments. Amid rising responsibilities, many caregivers sacrificed their own health and well-being for the sake of people they love, dealing with emotional isolation, financial strife, and lack of time to recharge. These challenges were even more significant among women.

Furthermore, these challenges were felt across caregivers of all disease areas, as the data from the Global Carer Well-Being Index showed. For instance, mental health was a deeper strain for caregivers who helped those impacted by cancer. And, for caregivers of people living with multiple sclerosis (MS), the pandemic showed that 76% were concerned about affording proper long-term care as an MS caregiver – an issue likely to exacerbate with today’s inflation rates.

In the US, the story is very similar to the worldwide experience of caregivers, and even worse in certain areas; for example, a US-specific data point from the Carer Well-Being Index showed that on average, American caregivers spend more hours caregiving than most of their global counterparts.

As the world population ages, caregivers will continue to play a critical role, providing substantial economic value to countries globally. Yet society continues to overlook their efforts; in fact, the Global Carer Well-Being Index showed that 94% of caregivers agree the important role they play is not widely recognized by society. To make matters worse, about one out of three caregivers anticipated their caregiving duties to nearly double and continue at heightened levels post-pandemic.

Add it all up, and today, the world faces a deep societal problem: caregivers are undercounted, unheard, struggling and feel all but invisible. If we continue to minimize the value of unpaid caregivers, this has the potential for disastrous impact, as various research has shown that when the mental health of the caregiver is compromised, the outcomes of those for whom they are caring are affected. Continuing to undervalue our caregivers has the potential to place additional pressure on healthcare systems, which, in turn, will impact the economy.

There’s no one-size-fits-all approach to improving the needs of caregivers, but here are five priorities to consider:

1. Safeguard the health and well-being of unpaid carers. Given the increasing prevalence of mental health issues, caregivers need to be encouraged to take time for themselves. One important way to support mental health is through carer support networks. In the US, organizations like Caregiver Action Network and National Alliance for Caregiving have helpful resources and support groups to provide that connection.

Looking to the future, no-cost counseling programs would go a long way toward assisting caregivers in coping with stress and challenges associated with caregiving.

2. Minimize the financial burden placed on unpaid caregivers. We must recognize that the financial burden on unpaid caregivers is real, and there’s a need to improve this challenge. But there are ways to help in the short-term; for starters, workplaces can provide paid time off dedicated to caring for their loved ones.

In the US specifically, affordable transportation accommodations (both urban and rural), groceries and meal services are all areas society can seek to improve upon.

3. Enable access to user friendly information and education. The pandemic increased the use of telehealth, which has evolved healthcare and enabled progression in many ways. However, for older caregivers, 68% surveyed in the Global Carer Well-Being Index agreed they need additional guidance/training on how to use telehealth/online tools/mobile apps for caregiving.

Offering free, high-speed internet is important to kickstarting the uptake of telehealth tools – and providing support and training of digital health resources will be an important next step.h

4. Support unpaid caregivers who are employed. As the Boston Globe acknowledged earlier this year, the strain of juggling professional and personal responsibilities can take a heavy toll. Employers can help take the first step on easing the strain and pushing a national agenda by creating flexible workplaces that respect caregiving obligations. Further, educating the surrounding workplace environment on the needs of caregivers can help to alleviate unconscious bias.

5. Invest in research to ensure caregivers’ needs and contributions are recognized and addressed. The more research conducted, the better we can understand and address the needs of caregivers and disparities among various populations. From qualitative research involving focus groups with caregivers across disease areas, whether dementia, MS, cancer or otherwise, to quantitative studies, across both the private and public sectors… the more we know, the more likely we can drive change at the policy level.

November is National Family Caregivers Month in the US, an opportunity to honor those who have taken on this critical role of caring for loved ones, while raising awareness of the challenges they face daily and what needs to be done to drive tangible changes.

Now more than ever, federal and state governments, public entities, the private sector and individuals across the US all have roles to play in addressing these problems. With focused effort and collaboration across all facets of society, we can improve the lives of our unpaid caregivers.

Photo: ipopba, Getty Images

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Self Care

Ask the Investor: MedCity INVEST offers new opportunities for startup-investor meetings

by Bailey Amber
written by Bailey Amber

contest, spotlight

Given that we are still practicing physical distancing, the annual MedCity INVEST conference is launching a novel way to facilitate interactions between innovative startups and investors looking for the next new thing. INVEST is scheduled for April 19-23 and will take place virtually.

Called “Ask the Investor” these intimate meetings with healthcare and life science investors throughout the week will provide startups a unique opportunity to connect directly with traditional VCs and Corporate VCs, hear about their investment strategies, and ask questions. Each virtual meeting will feature one investor and last for 45 minutes. Following the investor’s presentation on their investment strategy and area of interest, startups will be asked to provide a 1-minute company overview. There will be an opportunity for Q&A. Investors will receive executive summaries for each startup with contact information. Space is limited to 10 startups per meeting. Please register here. 

These are the following health tech investors who will present their strategies from their respective perspectives as a traditional VC, payer VC and provider VC and more will be added to INVEST’s agenda page as we confirm speakers:

Ellen Herlacher Principal, LRV Health
Ellen is a healthcare investor with over a decade of experience in investment management, healthcare operations, and corporate strategy. She joined LRVHealth in 2020 and was previously director of Tufts Health Ventures (corporate venture arm of Tufts Health Plan), manager of Emerging Businesses at athenahealth, investment manager at Goldman Sachs, and consultant at Bain & Company. She holds a B.A. from Cornell University and M.B.A. from Massachusetts Institute of Technology.

Dennis Depenbusch, Director New Ventures, BCBS Kansas Dennis is responsible for the direction, coordination, evaluation, and management in developing and leading strategic investment for BCBS Kansas. The focus of the initiative is to develop a portfolio of investments that, as a whole, focus on improving the Kansas (and national) healthcare market, enhance the core business of the company and generate revenue. These strategic investments are expected to be integrated into the company as part of its overall long-term strategy. Dennis brings more than 20 years of experience in creating, building and leading high growth enterprises in the United States and abroad. He most recently served as CEO/president of Ulterius Technologies in Wichita. Previously, he was in leadership and board roles for various technology and health-related start-ups in the USA and Europe. He holds two degrees from the University of Kansas: a bachelor’s in business and a master’s in business administration. Depenbusch is the outgoing president of the board of trustees for Bishop Seabury Academy, Lawrence, Chairs the MBA advisory board for KU’s School of Business, and is the current President and Board Member of MHIN.

Austin Duke, Senior Venture Associate, UnityPoint Health Ventures
Austin Duke currently serves as Senior Venture Associate at UnityPoint Health Ventures where he helps lead all investment activities including sourcing, diligence, execution and post-investment support. Austin brings more than 10 years of biomedical research and development experience along with a deep understanding of the opportunities and challenges presented to startup companies.

Prior to joining UnityPoint Health, Austin served as Chief Science Officer at Nexeon MedSystems Inc, where he led scientific, clinical and regulatory activities in support of the development and commercialization of Nexeon’s neurostimulation technology platform. Prior to Nexeon, Austin served as Vice President of Emerging Therapies at Rosellini Scientific and co-founded Nuviant Medical. Austin obtained his PhD in Biomedical Engineering from Vanderbilt University and his B.S. in Biomedical Engineering from North Carolina State University.

More investors within other healthcare sectors will be added soon. Space is limited to 10 startups for each “Ask the Investor” session. Please register here. 

Photo: Adam Taylor, Getty Images

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Self Care

Teen entrepreneurs create platform to make drug donations easy

by Bailey Amber
written by Bailey Amber

When he worked part-time one summer in a Brooklyn pharmacy, Rahul Kavuru made occasional sweeps of the store’s inventory to find nearly expired drugs and dispose of them.

The high school student suspected the drugs could have been put to better use. Conversations with his peers reinforced the notion and eventually prompted action on what is, in fact, a costly problem for pharmaceutical companies.

In early 2020, Kavuru, his sister and a friend started a nonprofit, Altrui Rx, and built a technology platform to match drug companies with nonprofits that help patients in need.

“The biggest problem is that it costs money to destroy the medication and it costs money to hold the product,” said Kavuru, a junior at St. Paul’s School in New Hampshire. His co-founders are his sister, Shreya Kavuru, a senior at St. Paul’s, and Sourish Jasti, a freshman at The Wharton School at the University of Pennsylvania.

Their research into the problem led them to conclude that roughly $5 billion worth of medication is destroyed each year at a cost of between $1 and $3 per pound, Rahul Kavuru said in a phone interview.

Drug companies often collaborate with charities to distribute medications they might otherwise destroy. But it is hard for manufacturers to work with more than a handful of charities, said Jasti, who plans to pursue studies in entrepreneurship and innovation.

Altrui’s platform makes it easier to find charities and learn what they need, Jasti said. Drug companies sign in, upload inventory that is near expiration and then pick from a list of organizations where they can send it. The charities are all vetted by Altrui.

Drug companies can then download packing slips and tracking numbers to send their products to the selected charities.

“We are an intermediary in the process,” Kavuru said. “The goal is to bring out more impact and create an accessible portal for these medications.”

Within a few months after its founding, Altrui had redirected nearly $12.3 million worth of medication. Its pharmacy partners include Aurobindo Pharma, Ingenus Pharmaceuticals and Rising Pharmaceuticals, where Altrui’s founders had an inside connection through a neighbor in their hometown of Holmdel, New Jersey. Rahul and Shreya now live in Rumson, New Jersey.

The founders initially spent their own money to build and host their website. But they have gotten subsequent funding from Aurobindo, the New Jersey Health Foundation and the BEN Health Innovation Summit, which is sponsored by Rutgers University. BEN stands for Biomedical Entrepreneurship Network.

They also have started a companion nonprofit, Altrui Education. It provides college counseling services to disadvantaged students. The two charities are staffed by a team of 15 volunteers.

In addition to their work at Altrui, Jasti and Rahul Kavuru run a blog called CompanyRoots, which interviews business experts and entrepreneurs about their experiences.

Altrui’s founders have impressed Paul Moore II, president and CEO of CitiHope Relief and Development in Margaretville, New York.

Over the past three decades, CitiHope has delivered more than $1.5 billion worth of donated medication to people and organizations around the world. The nonprofit has existing relationships with drug companies, but decided to give Altrui a try, Moore said in a phone interview.

This led CitiHope to get connected to new donors using Altrui’s platform. Moore, whose own philanthropic career began when he was a teenager, was heartened to find that the founders of the nascent startup have worked hard to learn more about this charitable niche.  

“Every interaction I’ve had with them has been, ‘Can we do this better? How have you managed this in the past?’” Moore said.

Photo: cagkansayin, Getty Images

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Managing medications during Covid-19: A team effort in transitional care

by Bailey Amber
written by Bailey Amber

Metoprolol (muh•tow•pruh•laal). Eszopiclone (es•zoe•pik•lone). Hydrochlorothiazide (hy•dro•klor•oh•thi•a•zide). Amitriptyline (a•muh•trip•tuh•leen). Canagliflozin (kan•a•gli•floe•zin).

Are you able to recognize or pronounce any of these commonly prescribed medications? If so, you might be a pharmacist, or at least have experience providing patient care. It’s fair to say that most people find it challenging to pronounce drug names, and it may be even more challenging for the elderly.

It’s not uncommon for elderly patients to be prescribed multiple medications to treat multiple chronic conditions, and sometimes these medications come from multiple providers. In my experience, I have seen many patients fail to understand what, why and how to take their prescriptions. Some have the help of family or caregivers while others may not, which makes it even more challenging to manage. Many factors can contribute to these challenges including vision problems, memory loss, swallowing problems and or hearing loss. Medications can be extremely helpful in treating and preventing disease, or they can cause a major health setback if not taken appropriately.

As a pharmacist by training, or “pharmist” as my Grandpa likes to call me, I spend my time reviewing his medications when I’m in town to visit. He loves to sit down with me and tell me all about the medications he’s taking and what he takes them for.  At 87 years old, he’s impressively taking only three (3) medications. Up until last year, he was taking only taking one (1). He’s incredibly sharp and has never needed any extra assistance. My Grandpa is the perfect patient. He’s highly adherent and takes his medications every day, at the same time, right before his morning coffee. I understand the importance of adherence and adherence to the right medications, but I have never personally experienced or witnessed the challenges that come with adherence following discharge from a hospital stay, until now.

Covid-19 hit close to home and affected both of my grandparents this past Thanksgiving. After a few days, it was apparent they were unable to weather this virus alone. It severely affected their cognitive status and caused weakness so severe they were unable to stand or walk on their own. While staying with them during this time, a decision was made to take my Grandpa to the E.R., which led to a six-day hospital stay. Because I know he visits multiple providers and pharmacies, I knew the hospital wouldn’t have a complete record of all the medications he takes….and I was right.  I made sure he went with an updated med-list so that the doctors could give him his regular medications while in the hospital.  I knew this med-list would likely change following his discharge.

Upon discharge, I was provided with a long list of instructions from multiple people on the care team that was difficult to follow along even for me. First came a call from the nurse,  then a call from the provider, then a call from the pharmacist, and lastly a call from the company who would be dropping off his home oxygen. The pharmacist’s call was helpful, but not appropriately timed — I had no discharge papers to reference.  The provider called again, to go over the medications with us. The review was fast. Medications were discontinued. Medications were added. Some medications were named in their brand name while others were listed generically.

Who could possibly follow along? No one expressed to us the duration of these medications. When could they be stopped? Will they ever be stopped? Were refills needed, what doctor would continue to prescribe them? What if I had not been around to help?

Following my Grandpa’s return, I immediately sat down to review and organize all of his medications, new and old. One medication was discontinued, while 4 were added. My Grandpa went from taking 3 medications to 7 overnight, and each medication came with its own set of directions:

  1. Take this tablet with food.
  2. Take this tablet on an empty stomach.
  3. Take this tablet every day and skip on Saturdays.
  4. Take this tablet on Monday, Wednesday, and Friday.
  5. Skip this tablet for two days. Restart on Sunday.
    1. 2 days later* “Actually, take this medication every other day starting Tuesday.”
  6. Take this tablet every day.
  7. Take this tablet three times a day and make sure not to eat too much sugar or salt with this med.

With all of this information, I created a “Fridge Report” for when I’m not around. A Fridge Report is a simple and easy to read medication list. It displays all medications a patient is taking and how to take them in a nice visual display that is easy to follow. I also called and spoke with his primary care provider (PCP) and cardiologist to confirm his active medications and to notify them of the newly added and discontinued medications. I can’t imagine my grandparents, or anyone else’s grandparents, managing this without the help of a pharmacist. The Fridge Report was highly appreciated by my family.

“We need that (Fridge Report). It’s very detailed. No mixing up or second-guessing of medications. Now I know what to give and when to give it.” – Lorraine Armenta, My Aunt

According to the World Health Organization (WHO), care transitions threaten patient safety as they can increase the possibility of losing critical clinical information and require an increased degree of coordination. I believe a multifaceted approach is needed to improve care transitions and is especially needed for vulnerable and high-risk individuals. The transition between inpatient and community settings, in particular, is prone to medication errors related to a lack of communication between health care providers, missed patient follow-up, inadequate patient education, incomplete medication reconciliation, and the absence of patient involvement in medication management. Pharmacists can and should take a more active role in improving medication safety during care transitions; this could lead to a reduction in hospital readmissions and improved quality of care.

Pharmacists serve as quarterbacks of a patient’s at-home-care team, providing essential help to those who are taking multiple medications. We are medication safety experts and have access to sophisticated and innovative tools to better manage the medication-related needs of patients and mitigate adverse drug events (ADEs). Ultimately, engaging with your local pharmacist can reduce the burden placed on a patient’s family and the primary caregiver, while making the transition to at-home care manageable.  

Photo: JohnnyGreig, Getty Images

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Management lessons from the pandemic: Healthcare leaders must become “activators”

by Bailey Amber
written by Bailey Amber

Everyone has a personal list of challenges faced and overcome during the Covid-19 pandemic. At the top of mine is navigating the transition to leading a healthcare IT company as a first-time CEO.

On March 4, 2020, I assumed the CEO role at PatientKeeper, a Massachusetts-based EHR optimization software company. Within two weeks of starting the job, HIMSS20 was canceled, much of the economy shut down, fear had gripped the industry, and financial risk was pervasive.

In a completely unexpected twist of fate, among my first actions upon joining the company was to equip our 200-person workforce to work 100% virtually. Our company’s situation certainly was not unique – nearly every organization that could “go virtual” did so – but mine was. After all, I had barely set foot in the office before I was forced to close it.

Just as significantly, we had to respond quickly to conditions our customers – physicians and other healthcare providers across North America – faced as a result of the pandemic.

As a brand new, first-time CEO, this trial-by-fire experience in leading through a crisis taught me a lot and gave me much to reflect on. Most notably, the responsibility of a healthcare executive (and any leader, for that matter) appears to have fundamentally changed. We may have defined ourselves at one time as decision-makers or problem-solvers or communicators or as those that hire and encourage employees. Going forward, I propose that we must, first and foremost, be activators. We must personally act and execute with a sense of urgency and surround ourselves with others that value velocity and are capable of delivering results at ”Covid speed”, even once the pandemic is history. We must reject old norms such as long, bureaucratic and time-consuming presentations, workshops, and layers of approval required to make decisions. We must drive execution and results based on hypotheses motivated by doing what is right for the patients, providers, and other constituents we serve, without necessarily having the full financial and operational analyses blessed, baked, summarized, and socialized. And we must accept rapid transformation as the norm, and the potential for failure that comes with it.

As we continue to fight the pandemic, I am more convinced than ever that the next decade in medicine will be defined by automation. Our industry will be empowered by technology that will activate data and analytics to both improve clinical care and help reduce the administrative burden on healthcare providers — a huge problem that was exacerbated by Covid-19. Physicians, other providers, nurses, and care teams, who have long been forced to accept monolithic electronic health records (EHR) systems and their usability shortcomings, will require and demand a versatile system of experience that delivers immediately relevant clinical information – think of it as “precision HIT” — to enable higher quality outcomes; and that is available 24×7 on clinicians’ mobile devices, regardless of the physical location of the care team. These ideas are not new, yet it will be the organizations that utilize these products and services and respond at ”Covid speed” to the changing needs of the healthcare community that will be the winners in the future.

Now imagine a world where we attack other pressing problems – poverty, mental health, cancer, obesity, gun violence, climate change, and drug addiction, to name a few – with the same speed, resources, and urgency as we are the current Covid-19 pandemic. I can! And I believe the new post-pandemic responsibility of any leader will be to serve as an activator, driving velocity and a sense of urgency as our pre-eminent responsibility.

Photo: z_wei, Getty Images

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