Eradicate the disability tax, before it’s too late [PODCAST]

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“Some may say that we all come into this world with our own luck, and if we end up having to endure a disability, then other people in society should not be held financially responsible. To that I say, do we not have a moral imperative to ensure that we create a society that we would be proud to live in? Humankind has only come so far on the basis of cooperation, trust, and looking after each other. We can’t just abdicate our responsibilities in the face of selfishness, or because it feels easier. United we stand, divided we fall. I would hope that if one day you find yourself a victim of fate, someone extends a hand to you in your time of need. Because we’re all healthy—only until we’re not.”

Shreya Kumar is a medical student.

She shares her story and discusses her KevinMD article, “Eradicate the disability tax, before it’s too late.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Here on the show, we have Shreya Kumar. She is a medical student, and she wrote the KevinMD article “Eradicate the disability tax, before it’s too late.” Shreya, welcome to the show.

Shreya Kumar: Hi, thank you so much for having me.

Kevin Pho: So, we’ll get into your article in a little bit. First off, can you share your story and journey to where you are today?

Shreya Kumar: So, I’m a first-year medical student, and growing up, we grew up with a family member who has a disability. My family member has had the disability for coming on 20 years now, and growing up, it was always sort of an implication in the background, this disability and all the things that came with it. Whether that was family troubles that arose because of it for the extended family, or the inability to even pay for some things while we were growing up, because, again, my family member lost the ability to work, and they were the breadwinner of our house. So we went on disability payments and government aid in order to help us through the tough times.

Growing up, again, we didn’t really have much of a chance to do things like travel or go out, so I really found a route to self-expression through reading and writing. When I was looking into what I wanted to do with my life and where I wanted to be, medicine had come up a couple of times, just because I feel like that comes up a lot when you live with people who have chronic illness or chronic disability. But I never thought it was for me until I started college.

When I started college, I began to volunteer with a couple of different community service organizations, and a lot of them were geared toward health and medicine. So when I was out volunteering with these underserved populations, I really started to see that my family story wasn’t actually that unique. There were thousands of people who were going through something similar, and really, we’re all under this system. It’s a broken health care system that affects us all in numerous ways, and it’s not just about having the illness. It’s always about what’s in the background, what’s affecting your family or your life and situation as a result of that disability or illness.

That comes up a lot in terms of things like economics and the ability to pay for things, including but not limited to care, but also other things that are necessary for life. For us, we need someone to come by our place to help with activities of daily living, and once I grew older and our family didn’t qualify for the same kind of government aid anymore, suddenly we were paying out of pocket for things like that. So when I looked into possible careers, I realized that I could actually try to make a difference in this, not only through treating patients through medicine, but also as a physician advocate for patients, especially patients from underserved populations. So I applied to medical school, and here I am today.

Kevin Pho: So through your experience, both with your family and volunteering with the underserved populations, can you share maybe some stories or case studies of some of the challenges people with disabilities face, either in everyday life or with their interactions with the health care system?

Shreya Kumar: So when I was volunteering with the Punjabi diaspora here in Sacramento, a lot of these families are working-class families. They are self-made business owners, and they work 10-12-hour shifts doing things like managing a store or truck driving and things like that. When you get hit with a chronic illness or a chronic disability, something like diabetes, which requires regular management with the physician, oftentimes, if you don’t have the best health insurance or if you buy your own private insurance, then the cost or the copay just of going in for your regular checkups can actually be a lot more than you can afford.

By the nature of just having a disability, you have to pay more to live a normal life than any other person, on top of dealing with your own disability. That expense comes in many different ways. If you have diabetes, oftentimes you have to eat very healthy, very nutritious meals, but we don’t subsidize produce in the same way that we subsidize very unhealthy foods, and so it becomes an additional expense for you to eat healthy and manage your condition. That’s part of the thing I like to call the disability tax, which is that you’re constantly paying more to live your life as normal, which other people may not have to deal with.

Kevin Pho: So you talk more about that, of course, in your KevinMD article titled “Eradicate the disability tax, before it’s too late.” Now, for those who didn’t get a chance to read that article, can you just walk my audience through it and share the story of why you decided to write it?

Shreya Kumar: Yeah. So I was scrolling through social media one night just before school started, and I came upon an article that was talking about rideshare drivers refusing certain people rides because they said they didn’t have a face mask. But if you look in the article, the article talks about how this is sort of used as an excuse. Even if the rider did have a face mask, there is no way to provide evidence, or there is no way to prove that they did. A lot of times, people with disabilities do rely on rideshare apps in order to get to where they need to go. I went all the way down to the comments, and I found a person who was blind talking about how they were refused on multiple occasions because they have a service dog, and, again, similar excuses were used for why they were not provided a ride.

I’ve also been dealing with some family issues regarding my family member with a disability and our inability to get someone to be able to come and provide home health care, home health aide care, for our family, which we need for activities of daily living. You can’t not have one. If you don’t have one, then your family has to pitch in and do the work themselves, but there’s a huge crisis with that. I just sat down, and I was very, very frustrated, sort of at the end of my rope, and when I get that way, I usually tend to write something.

So I sat there for about an hour and a half, just furiously typing and looking up articles about prescription drug prices, which I mentioned in the article: things like how much it costs for EpiPens, how much it costs for new drugs, like a new drug for postpartum depression. I sat there, and I just wanted to put together a message that conveyed how I felt about the topic, and about the economic impacts of having a disability and how they affect your normal life, beyond even just living with the illness.

Kevin Pho: What kind of resources are available to those who are disabled that address some of the issues and challenges that they face?

Shreya Kumar: Yeah, a lot of times, some startup companies are trying to make a difference for things like prescription drugs. There’s GoodRx, which a lot of people have heard of by now. We used to recommend it to patients in our clinic, and that provides a discount on certain medications. And then there are other resources. You can always reach out to any sort of local clinic organizations, or even if you have a clinic manager or a clinic where you go, you can always speak to the financial aid officer at your clinic or your medical practice and explain your situation.

I think the key to all of that is, because the system isn’t designed to help you, unfortunately, we have to reach out on our own and really find a physician or find a health care professional who you trust, who can help you look into all of these resources, and never give up in that sense.

Kevin Pho: Are there any policy initiatives, either on a state or national level, that are currently being considered to address some of the disability tax that those who are disabled face?

Shreya Kumar: Yeah, I had heard that California, specifically in regard to prescription drugs, is looking into an initiative in which the state would manufacture and produce its own drugs, specifically for things like chronic conditions. I believe one of the drugs they were considering was insulin, so that’s kind of a long-term project. And then, as always with Congress, what we really want to talk about is giving Medicaid, Medicare, for example, the ability to negotiate prescription drug prices, which they are currently not allowed to do, and that’s why we end up paying so much for our medications, for people who are eligible for that. So, different policies like that.

I really think we need to go more wide-ranging with that, because these are great, but we also need to consider things that affect our policy on a social level, which is having more policy that addresses things like home health aide care, or even more policies regulating the quality and care provided by nursing homes, which is yet another problem. With nursing homes, the ones that are covered are really not up to par with their standards and how they treat patients, and, again, that comes down to economics. If you can pay for better care, then you’ll get better care, and if you can’t, you can’t.

Kevin Pho: We’re talking to Shreya Kumar. She is a medical student. She wrote the KevinMD article “Eradicate the disability tax, before it’s too late.” Shreya, even if you’re in your first year of medical school, you probably have more experience, through your personal story with your family and your work with the underserved, when it comes to issues facing the disabled. What are some things that we clinicians should be thinking of when we’re talking to people who are disabled in the exam room, and some of the issues that may not be apparently obvious?

Shreya Kumar: Honestly, when I was growing up, one thing with my family member that we had to deal with constantly, that I wish our clinicians had paid better attention to, was that we had to take our family member to physical therapy and things like that, and our primary caregiver in our family was not able to drive long distances. But we would constantly be assigned to a clinic or a location that was impractical for us to actually reach, because we had to, again, rely on public transportation, with a bus that would run an hour late, and oftentimes we would miss the appointment or we would be late.

So, things like really asking the patient in the exam room, “What challenges are you facing in meeting your care needs, and how can we point you in the right direction?” instead of just assigning the easy solution and moving on without actually asking the patient what they would need to be helpful or successful in their care.

Kevin Pho: And my final question: What’s your take-home message that you want to leave with the KevinMD audience?

Shreya Kumar: My take-home message would have to be, again, in the words of the late Congressman John Lewis, just make some good trouble. Go out there, disrupt the system, challenge the status quo, and always keep pushing for a better solution. Never just be content with letting things be the way they are because it’s easier, because it’s more convenient for you.

Kevin Pho: Thank you so much for sharing your time and insight, and thanks again for being on the show.

Shreya Kumar: Thank you again for having me.

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