Episode 7: Embracing Carers with Lynn Taylor

[00:00:00] The dictionary defines the word conundrum as a confusing or difficult problem.

[00:00:06] Its synonyms include quandary, dilemma, puzzle, and enigma.

[00:00:12] Welcome to the MS Caregiver Conundrum.

[00:00:16] Embracing Carers

[00:00:33] Embracing Carers is EMD Serono's global initiative to increase awareness, discussion, and action

[00:00:40] about the frequently overlooked needs of unpaid family caregivers.

[00:00:45] When it comes to supporting caregivers, EMD Serono has consistently walked the talk,

[00:00:52] collaborating with leading caregiver support organizations around the world.

[00:00:56] EMD Serono has published detailed research on the unmet needs of family caregivers, produced

[00:01:03] a documentary film to raise awareness of the role that MS caregivers play, and has gone

[00:01:09] so far as to include the voice of caregivers in the drug development process.

[00:01:14] As I always remind you at the end of each episode, this podcast itself is being sponsored

[00:01:19] by EMD Serono's Embracing Carers initiative.

[00:01:23] Joining me to discuss why raising awareness of the role that unpaid family caregivers play

[00:01:29] is a strategic decision that EMD Serono has made, and to share some of their eye-opening

[00:01:35] research highlighting the unmet needs of family caregivers is Lynn Taylor, Senior Vice

[00:01:42] President and Head of Global Health Care Government and Public Affairs at EMD

[00:01:47] Serono.

[00:01:53] Lynn Taylor is a Senior Vice President and Head of Global Health Care Government and

[00:01:58] Public Affairs at EMD Serono.

[00:02:01] And in her role, Lynn is a global ambassador for EMD Serono's Embracing Carers initiative,

[00:02:07] an initiative which sheds important light on the work and public health needs of the

[00:02:11] world's unpaid caregivers, and as you might imagine, initiative that's always been

[00:02:17] particularly close to my heart.

[00:02:20] Full disclosure, I was fortunate enough to be personally involved in embracing carers.

[00:02:25] In 2018, my story as my wife Jean's caregiver was featured in a documentary called Seeing

[00:02:32] MS from the Inside Out, and the film actually premiered in Berlin during ECTROM's, the

[00:02:38] largest MS research conference in the world.

[00:02:41] Welcome, and thank you for joining me today, Lynn.

[00:02:44] Thank you so much, John.

[00:02:45] It's a real privilege and honor to be with you today.

[00:02:49] I want to get to embracing carers in a moment.

[00:02:52] First, I want to ask why a large pharmaceutical company like EMD Serono chose to launch an

[00:02:59] initiative that's aimed at caregivers instead of patients?

[00:03:04] It's a very valid and great question, Don.

[00:03:07] So as a company, we're of course incredibly passionate about the well-being of patients.

[00:03:14] And so often, a big part of that comes down to the incredible caregivers in their lives

[00:03:21] who are with them through every step of their journey, like you.

[00:03:25] But when looking at caregivers, the question becomes, who's caring for them?

[00:03:30] Who's advocating for the very real needs of the millions of people around the world

[00:03:35] who are sacrificing their time, resources, and often their own health to care for

[00:03:40] someone in their life who needs them?

[00:03:43] So it's our view that caring for these caregivers is a crucial part of our commitment to patients,

[00:03:51] because caregivers are such an important part of our patient's lives and their health outcomes,

[00:03:55] even if they may not always get the recognition they deserve.

[00:03:58] So the healthcare system truly could not exist the way it does without them, and we

[00:04:03] think it's important that society recognizes that and does its part to support the people

[00:04:09] who are out there supporting others.

[00:04:11] And so that's why we are involved and very passionate about caregiving.

[00:04:17] And how would you describe what embracing carers is all about?

[00:04:22] So embracing carers is really all about caring for the caregiver and making sure that unpaid

[00:04:29] caregivers around the world are getting the support and recognition they deserve and

[00:04:34] need for all of the incredible work that they do.

[00:04:37] As you know, caregivers are a massively under-recognized part of our healthcare infrastructure, playing

[00:04:45] many different roles in a patient's life from managing finances, organizing medical appointments,

[00:04:53] providing emotional support, et cetera, et cetera, et cetera, all being done without

[00:04:58] pay.

[00:04:59] But more than that, caregivers are regular people, spouses, parents, children, neighbors.

[00:05:07] Who have needs outside of being a caregiver.

[00:05:10] And without the proper support, they often have to set aside their own health and well-being

[00:05:16] to support their loved ones.

[00:05:18] And so we were collaboratively with an advisor group of nine global caregiving organizations

[00:05:26] to find ways together to improve caregivers' health and wellness while also increasing

[00:05:33] awareness and support for them within healthcare systems around the world.

[00:05:39] In late 2018, embracing carers published a report titled Living with Multiple Sclerosis,

[00:05:45] The Caregiver's Perspective.

[00:05:48] I had the privilege of writing the forward to that report.

[00:05:51] And the report highlighted the major takeaways of a survey of MS caregivers in seven countries,

[00:05:58] including the US, the UK, Canada, France, Spain, Italy and Germany.

[00:06:04] What stood out most to you in that report?

[00:06:08] Thanks, John.

[00:06:10] We are and I am so grateful for your input and sponsorship of this important and insightful

[00:06:16] project.

[00:06:18] So as an organization, we've had a longstanding mission to support caregivers and address

[00:06:24] their often overlooked needs.

[00:06:26] However, despite all the work we've done so far, the report was still really eye opening

[00:06:31] to me.

[00:06:32] Specifically, the burden caregivers take on and the impact it has on their own health,

[00:06:38] both physical and mental.

[00:06:41] And so I'm so glad this report was developed to shine the light on these disparities.

[00:06:46] But it also has brought to the surface all that still needs to be done for the people

[00:06:51] who carry the weight of their responsibility to take care of their loved

[00:06:55] ones health.

[00:06:56] So we must continue to really find the ways to provide care for the caregiver

[00:07:01] since their health and well-being, whether mental, physical, financial, all three

[00:07:07] is just as important as the health of the diagnosed patient.

[00:07:10] The fact that over half of the respondents said that the healthcare

[00:07:15] professional of the individual that they care for did not explain

[00:07:21] the disease, its progression and potential care needs really well was

[00:07:27] surprising and frankly, quite upsetting to me.

[00:07:33] First, we know that the explanation of the disease and its progression should

[00:07:39] be part of the conversation at diagnosis, whether the care partner is there or not.

[00:07:45] MS is a complicated heterogeneous disease and healthcare professionals should

[00:07:52] take their time to discuss the variety of symptoms, progression and really fully

[00:07:59] thoughtfully answer the questions that the patient may have at initial diagnosis

[00:08:04] and then throughout their journey.

[00:08:06] The second right is MS diagnosis has a significant impact on the lives

[00:08:12] of caregivers as well.

[00:08:14] And as the report outlined, many caregivers sacrifice or delay their own

[00:08:18] priorities in their lives to help those they're caring for.

[00:08:22] So because of this, it's equally important for healthcare professionals

[00:08:27] to be educated and provide information on the resources and tools

[00:08:32] available to caregivers.

[00:08:33] And I believe it's our job as a biopharmaceutical organization to work

[00:08:39] with our partners on the development and dissemination of these tools,

[00:08:44] as well as to educate healthcare professionals about their availability

[00:08:49] and their use.

[00:08:50] And so this report has allowed us to look inwardly as to how we can

[00:08:55] help address this unmet need.

[00:08:58] So I think as we continue to work with you and others to bring

[00:09:03] awareness to the caregiver perspective, developing tools and resources

[00:09:09] to aid and empower them and really advocate for policies that we can

[00:09:13] put into practice, we'll be able to chip away at these gaps together.

[00:09:19] I want to circle back to those policies that might might exist one day

[00:09:25] in just a moment.

[00:09:26] As you were talking about caring for the caregiver and their health

[00:09:31] and well-being, it reminded me of an analogy that I've often used.

[00:09:38] I kind of see the caregiver as a weather front that sort of blows

[00:09:43] into that space the patient is in.

[00:09:47] So literally when the when a caregiver walks into the room and their

[00:09:51] loved one is there, if that caregiver is healthy, if they're feeling

[00:09:57] okay about things, if their outlook, if their perspective is positive,

[00:10:03] it's going to be a pretty sunny day for that patient.

[00:10:06] On the other hand, if the caregiver is struggling, whether it's

[00:10:10] physical or emotional needs that are being unmet, that's going to

[00:10:15] impact all of their interactions with that patient.

[00:10:19] And so the patient's well-being takes a hit as well.

[00:10:23] And and to me, that's why highlighting some of these things.

[00:10:27] I remember as I went through that report, I just kept nodding

[00:10:33] my head saying, yeah, I get that.

[00:10:35] I get that.

[00:10:36] I get that.

[00:10:37] These are things, the things that are quote unquote so surprising

[00:10:41] to so many people are things that caregivers immediately recognize

[00:10:45] as the kinds of obstacles that they live with every single day

[00:10:51] and work hard trying to overcome.

[00:10:54] So reports like this that shine a light on the kinds of things

[00:10:59] that need to change for everybody's well-being.

[00:11:03] Just really important work.

[00:11:05] If we can fast forward from 2018 to where we've been for the last

[00:11:11] year and a half in the midst of the COVID-19 pandemic, embracing

[00:11:15] CARES conducted a second global survey of 9000 unpaid family

[00:11:20] caregivers around the world.

[00:11:22] And among other insights, results from that survey showed 68%

[00:11:28] of the caregivers felt that the pandemic had worsened their

[00:11:32] emotional health.

[00:11:33] 54% said the pandemic worsened their financial health.

[00:11:38] Again, what stood out most to you in this survey and did any

[00:11:42] of these findings surprise you?

[00:11:45] I think we've all seen and felt deeply how big of a toll

[00:11:50] the pandemic has taken on people's mental health.

[00:11:54] And we've never seen such a frank and open discussion in the media,

[00:12:02] amongst family, friends, and in the workplace that we're seeing

[00:12:06] now about mental health.

[00:12:08] And for caregivers, what our survey and others have shown is

[00:12:13] that they're feeling the same stressors but intensified.

[00:12:17] And they're not often in a place where they feel they can discuss

[00:12:22] it or get that help.

[00:12:24] And while caregiving is rewarding, it can be immensely

[00:12:31] emotionally challenging.

[00:12:33] And caregivers often find themselves caring for the emotions

[00:12:36] of the person they care for in addition to trying to manage

[00:12:40] the stress that comes with their caregiving duties.

[00:12:43] And it's a lot to put on one person, right?

[00:12:45] Like we were just talking about.

[00:12:47] And so with the added elements of lockdowns and health concerns,

[00:12:52] moving into an increasingly virtual world, it can be both

[00:12:56] isolating and overwhelming.

[00:12:58] And some striking findings in this regard were that 76% of

[00:13:04] respondents reported feeling more burnt out than ever.

[00:13:08] And 81% said they'd sacrificed more of their personal life

[00:13:12] for the person they care for during the pandemic,

[00:13:15] which just goes to show us how widespread and intense

[00:13:20] the mental and emotional health struggle really is.

[00:13:23] And when it comes to finances, it's perhaps no surprise.

[00:13:29] The pandemic has been particularly devastating for caregivers.

[00:13:34] In the survey, 56% of respondents believe their household

[00:13:40] income would decrease due to pandemic.

[00:13:43] We know that employment can be in a difficult area for many

[00:13:47] who attempt to juggle paid work with their caregiving

[00:13:50] responsibilities.

[00:13:52] And with caregivers spending an average of 24 hours a week on

[00:13:56] caregiving, and many more than that, right?

[00:13:59] It's very common for caregivers to find themselves facing

[00:14:03] hard choices about their employment and whether or not

[00:14:09] they have the needed flexibility and understanding

[00:14:15] in their workplace.

[00:14:16] And so even for those caregivers working in caregiver

[00:14:21] friendly environments, the demands of working in

[00:14:25] caregiving at the same time from your home can be too

[00:14:28] much, leaving many to leave the workforce.

[00:14:33] And so there have been also increased costs of food,

[00:14:37] transportation, all the new burdens of PPE, which are

[00:14:41] particularly important and all of which have contributed

[00:14:45] to an increasing financial burden and putting caregivers,

[00:14:49] many caregivers in a precarious position.

[00:14:52] So lots, lots we've learned and seen from caregivers

[00:14:58] amidst the pandemic.

[00:14:59] And sadly, I think this will continue for some time.

[00:15:04] I'd like to switch gears and talk about caregiver

[00:15:07] participation in patient focused drug development.

[00:15:11] And it sounds like a mouthful.

[00:15:12] And I know it's something that EMD Serono strongly

[00:15:15] endorses.

[00:15:16] So first, can you explain what patient focused drug

[00:15:20] development is and then maybe talk about how or why

[00:15:25] caregiver participation makes sense here?

[00:15:28] Well, thank you for this question, John.

[00:15:31] EMD Serono, we are strongly committed to

[00:15:34] patient focused drug development.

[00:15:36] So this is a great question to ask and topic to raise.

[00:15:40] In our bid to discover, develop and deliver new

[00:15:44] medicines to meet patients needs and contribute to

[00:15:48] longer healthier lives.

[00:15:50] It's vital that we listen to learn from and act on

[00:15:54] what matters most to patients and their families.

[00:15:58] And to do that, we are changing the way that we

[00:16:01] approach research and development and building ever

[00:16:04] stronger partnerships with patients, caregivers

[00:16:07] and their advocates.

[00:16:09] So this new approach to involving people

[00:16:11] meaningfully in our work as how we're putting

[00:16:14] patient focused drug development into action.

[00:16:17] And although we call it patient focused drug

[00:16:19] development, the caregiver involvement in this

[00:16:21] process is equally as important as we begin a

[00:16:26] program to develop a new therapy and throughout

[00:16:30] the many steps along the lengthy process of

[00:16:33] the development.

[00:16:35] And when it's time to test the new medicine to

[00:16:37] make sure it's safe and delivers the benefits

[00:16:39] to patients want, the caregiver insight and

[00:16:41] perspective will be pulled in throughout.

[00:16:46] For this patient focused approach to succeed,

[00:16:50] we know we must earn and keep public trust by

[00:16:53] behaving responsibly and following through on

[00:16:56] these and all of our commitments to

[00:16:58] patients and their families.

[00:17:00] We also need to strengthen our partnerships

[00:17:02] with patient advocacy organizations to

[00:17:04] support their efforts to enlist and train

[00:17:07] patients and caregivers.

[00:17:09] So they're ready to take part in patient focused

[00:17:11] drug development related activities that we

[00:17:14] and others also may invite them to.

[00:17:17] So we believe strongly that this patient

[00:17:21] focused drug development approach will have

[00:17:22] benefits for patients, for the patient

[00:17:25] communities and ultimately for improved public

[00:17:28] health around the world.

[00:17:30] I couldn't endorse this approach more

[00:17:33] strongly.

[00:17:34] I think it is smart for any number of reasons

[00:17:39] to involve patients to the degree that you do in

[00:17:42] the process is, I think the benefits are

[00:17:46] self evident.

[00:17:47] But to also extend that participation of

[00:17:50] caregivers, I think makes so much sense.

[00:17:53] I've always said that caregivers are

[00:17:57] observing the same things that the patient

[00:18:01] themselves may observe or experience, but

[00:18:05] they're one foxhole over in the battle.

[00:18:09] So their perspective is slightly different.

[00:18:11] And I think it can fill in a lot of subtle

[00:18:15] gaps and nuances in describing a given

[00:18:19] experience and otherwise get lost.

[00:18:21] So I really think this is, as I said, just

[00:18:25] such a smart thing to do.

[00:18:28] In addition, caregivers not only are in

[00:18:31] that foxhole, right?

[00:18:32] Providing a different perspective.

[00:18:34] But in some cases when patients can't, you

[00:18:38] know, provide their own perspective, it's

[00:18:41] absolutely critical that the caregiver is

[00:18:43] there to provide that perspective.

[00:18:45] So not just, you know, a different view on

[00:18:48] what a patient is reporting, but additional

[00:18:51] or different information, right?

[00:18:53] Absolutely.

[00:18:55] Public affairs is something that also falls

[00:18:57] under your purview at EMD-Sirono.

[00:18:59] So here in the United States, as you scan

[00:19:02] the legislative horizon, do you see any

[00:19:05] public policy initiatives that offer any

[00:19:08] sort of remedy or relief to unpaid

[00:19:10] family caregivers?

[00:19:12] I do and I'm very optimistic that the

[00:19:16] COVID-19 pandemic has really shined a

[00:19:19] light on the immense stress that

[00:19:22] caregivers are under and the increased

[00:19:24] public attention on this really often

[00:19:27] overlooked area has meant that policymakers

[00:19:30] are starting to make this a priority in

[00:19:32] ways that they haven't in the past.

[00:19:35] Two major areas we're seeing a lot of focus

[00:19:37] on are funding of home and community-based

[00:19:40] services, such as what was proposed in

[00:19:43] the administration's original infrastructure

[00:19:45] bill, which could potentially alleviate

[00:19:49] some of the demands on unpaid caregivers

[00:19:51] time. Another policy area is the push

[00:19:55] for paid family medical leave so that

[00:19:58] those caring for a loved one with a

[00:20:00] chronic or intensive medical issue could

[00:20:02] take time off of work to provide that

[00:20:05] care. What's really unclear right now,

[00:20:08] which conversations of the proposed

[00:20:11] legislation and how the versions of the

[00:20:14] legislation will evolve, what will

[00:20:16] actually end up being voted on.

[00:20:19] But I think the good news is that more

[00:20:22] and more people, policymakers,

[00:20:26] general public, media,

[00:20:30] you know, celebrities, right, big

[00:20:34] think thought leaders are beginning to

[00:20:36] understand how critical and unpaid

[00:20:39] family caregiving really is and how

[00:20:42] much the relief is truly needed.

[00:20:45] So to me this has been a positive

[00:20:48] for the caregiving movement coming

[00:20:51] out of the COVID pandemic and where

[00:20:56] policy is now evolving in a very positive

[00:20:59] way, in my view.

[00:21:01] Well, Lynn Taylor, having EMD Serono

[00:21:04] amplify the needs of unpaid caregivers

[00:21:06] around the world has made a real

[00:21:08] difference in raising awareness of a

[00:21:10] problem that I see in the same way

[00:21:13] that you see it as a growing public

[00:21:15] health crisis impacting millions of

[00:21:17] families around the world.

[00:21:19] So thank you and EMD Serono for

[00:21:23] being the difference makers in truly

[00:21:25] embracing carers and sharing their

[00:21:28] stories and concerns so eloquently.

[00:21:31] Thank you, John.

[00:21:32] It truly is a privilege for me to work

[00:21:35] with all of the people and

[00:21:37] organizations around caregiving

[00:21:40] and to represent the company in doing

[00:21:42] this work.

[00:21:43] So thank you for all you do and

[00:21:45] for this opportunity to have this

[00:21:47] conversation today.

[00:21:50] Thanks for joining me for this

[00:21:51] episode of the MS Caregiver

[00:21:53] Conundrum.

[00:21:54] I hope you stop back next week for

[00:21:56] Episode 8, when we'll talk with

[00:21:59] Grace Whiting, CEO of the

[00:22:01] National Alliance for Caregiving

[00:22:03] and we'll be discussing the public

[00:22:05] policy issues that impact MS

[00:22:07] caregivers every day.

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[00:22:32] You'll find that link in today's

[00:22:34] show notes.

[00:22:35] The MS Caregiver Conundrum is

[00:22:37] sponsored by EMD Serono's Embracing

[00:22:40] Carers Initiative and you can

[00:22:42] learn more about the Embracing

[00:22:43] Carers Initiative by visiting

[00:22:45] embracingcarers.com.

[00:22:49] I'm John Strumb.

[00:22:50] Thanks for listening.

[00:22:52] Stay safe and make healthy

[00:22:55] choices.