The Healthcare System is Failing Young Adults in America

In all the reforms and discussions on healthcare, young adults and their mental health are rarely addressed. This is alarming as there has been a 71% increase in the serious psychological distress for young adults between 2008 and 2017. Not only are 18-25 year olds more likely to report having mental health challenges, but under half of these young adults with major depression actually got the treatment they were looking for. Even while it has become less stigmatizing to seek mental health treatment, young adults face a number of barriers and problems to finding support. For young adults who are also dealing with the stress of a rare or chronic disease, it’s imperative to find a reliable support system including mental health. I outline three main barriers to finding adequate mental health assistance below—insurance coverage, costs, and the lack of therapists focusing on young adult needs—but, I offer some suggestions for how to make it all work for you.

Insurance Coverage

Finding a therapist that fits your needs is tough. It took me about 20 emails and calls to find a therapist in DC and then another 20 emails and calls to find a therapist when I moved to Boston. I wouldn’t call myself picky, but the biggest problem was finding a therapist who took my health insurance. Many therapists would prefer to set up a private practice and get paid more; who could blame them? But this isn’t something new. Kaiser Health has noted a growing disconnect between mental health specialists and the health insurance industry since the end of the Second World War! A 2014 study said that only 55.3% of psychiatrists accepted insurance.


With so many therapists and psychiatrists not accepting insurance, I started asking their fees to see if I could simply pay out of pocket. For those who didn’t take my health insurance, they were charging between $125 to $175 per session. If I were to go weekly that could cost me up to $8,400 for the year! After enough calls, I finally found a therapist that fit my needs and accepted my insurance, but that isn’t the reality for so many young adults. 38% of young adults (18-24) work in the gig economy (e.g., Uber or Grubhub), which rarely provides health insurance. Many more might be in unpaid internships, in school full-time, working part-time, or have other barriers to insurance. With health insurance largely dependent on your employment, many young adults simply cannot afford adequate mental health treatment.

Specializing in Young Adult Needs

As a teenager, I used to hate going to therapy because all they wanted to talk about was my mom’s diagnosis of Huntington’s Disease rather than my needs. It was because I was just trying to find someone who took my health insurance and was available during the same time I was. I realized I was looking at it the wrong way and should have been looking for someone who had a background in working with young adults dealing with anxiety. It’s increasingly more difficult to find therapists who can understand my needs as a young adult, my anxiety, and the stress that comes from having a rare disease.

What to do about it

So how do we fix this issue? It starts by investing in programs and services around psychological, social, and emotional well-being of young adults. We need to make sure they are able to afford the high prices of seeing a psychiatrist because as of right now, we are only helping the older and wealthier people of America. This continues disadvantaging people already marginalized by healthcare and society at large: youth, young adults, and racial/ethnic minorities.

It took me longer than anticipated to find the right therapist. At one point, I thought about giving up because I never thought I would find someone. And now that I found a therapist, I am nervous that if anything happens to my health insurance or if I move, I will have to start the dreadful process over again. Lucky for me, I found a therapist. But there are many young adults who may not be as lucky as I am to afford a therapist who fits their needs. We need to figure out how to improve this, otherwise we are letting down young adults who actually need mental health support.

Some tips young adults can do now

Here’s a good plan for finding your therapist:

  • Think about and write down what you need. Do you feel you could use more support on coming to terms with your own rare or chronic disease? Perhaps how to handle the increased family stress because one of your loved ones’ health is failing? You may just have a lot of stress and anxiety from the stress of everything and want to learn strategies to cope.
  • If you are having trouble thinking about what you need, perhaps start with reflecting on what prompted you to think about going to therapy in the first place.
  • If you have insurance, go to your insurance’s “Find a Provider” page. Search for therapists in your area and that list a specialty that fits what you need: “Family stress,” “life changes,” “youth and young adults,” “general anxiety,” “etc.” If you are still having trouble finding a therapist, call up your health insurance company and ask them for help finding a therapist (that’s what I did after realizing the “Find a Provider” page was outdated).
    • If the above two options still do not work, then try searching on Psychology Today
  • Email or call (whichever you prefer) the therapists that jump out to you. Be open with what you want and ask the therapists if that’s an area they can help with. If not, ask for a referral. Think of it as an interview to make sure it’s the right fit on your end.

If you do not have insurance or cannot otherwise afford a therapist, here are some resources that I came across that could temporarily help when trying to find a therapist who fits your needs.

  • Dr. Fran Walfish, a psychotherapist, suggests contacting your local Psychoanalytic Training Institute to see if there is an affordable psychologist in your area.
  • Many qualified training hospitals have a department of psychiatry and outpatient psychology program that offers reasonably priced psychotherapy.
  • A nonprofit by the name of Open Path Psychotherapy Collective helps match middle and lower-income people (and families) with affordable mental health services and education[1]

Let’s start discussing how we can implement affordable mental health services for young adults in America. If you expect us (as young adults and consumers) to participate in mental health services, then make sure our voices are heard at the table.

[1] Please note these are suggested resources and are in no mean endorsements. Please make sure to further look into this to see whether or not they are a good fit for you.

Human Rights have no Color

Every day from about the age of five years old up until the age of 18, my classmates and I would say the Pledge of Allegiance. For those of you who may have forgotten the words, it goes like this:

“I pledge Allegiance to the flag of the United States of America, and to the Republic for which it stands, one nation under God, indivisible, with liberty and justice for all.”

Notice how at the end it says, ‘with liberty and justice for all.’ When I look back at this, I ask myself, are we actually providing liberty and justice to all Americans? The answer is simple: No.

I’ve been wanting to do something more than just sharing content on social media, but I wasn’t sure what exactly that would be. I thought to myself, as a white man, do I have a right to speak up? Would I be stepping on toes because I am a white man? And then I had a good friend of mine say “Seth, that’s the whole point.” What he meant by that was that we need everyone to come together and speak up about the issues happening in our country.

I would lie if I said I was okay at this time in our country because I am not. I am angry, frustrated, and sad. Better yet, I am shook. But this is only a small fraction of what black people have been experiencing over the years. It breaks my heart to not only see the systemic racism in our country, but how divided our country is.

I’ll admit that that I may have received the short end of the stick when it comes to testing positive for Huntington’s Disease and one day ending up deteriorating both physically and mentally. But that doesn’t make it any better knowing that many of my friends (some who I consider family), colleagues, and countless other people of color are constantly facing oppression in our country.

It’s interesting to hear people continuing to say “All Lives Matter” because they aren’t diving deeper into the reason behind the Black Lives Matter movement. Let’s first look at the Black Lives Matter’s mission – to eradicate white supremacy and build local power to intervene in violence inflicted on Black communities by the state and vigilantes. Now you can try to say, “but Seth, there is a lot of black on black violence we aren’t discussing.” Well research shows that this is due to the social and economic inequalities that black people face compared to white people.  

Let me paint another picture for you. Imagine if you were at an event for a specific cause (we will use Huntington’s Disease for this example) and suddenly someone yells, “I support all rare diseases!” That’s great, but this specific event is focused on one specific rare disease. Similarly, the Black Lives Matter movement is focusing on the social injustice black people have been facing for hundreds of years.

For my fellow patient advocates – Imagine if your loved one or someone you care deeply about was treated poorly…all the time. Personally, I would do anything in my power to make things right; and that’s exactly what black people are trying to do with these protests.

One of my manager’s once told me how it’s important to be comfortable with being uncomfortable and I couldn’t agree more. Try having these conversations with others no matter how uncomfortable it can be.

More importantly, try to have these discussions by phone or in person! Let’s stop hiding behind our phone or computer because it won’t do anything besides getting both sides angry at one another. As much as I love social media and technology, it’s easier to communicate and understand someone’s point of view based on their tone and/or body language.

I may not have all the answers (because I don’t) but what I do know is that we need to start coming up with ways to fix the systemic racism that has been destroying our country. And trust me, racism didn’t magically go away after the Civil Rights Movement and then suddenly reappear two weeks ago. You may just be seeing it now because you aren’t black or a person of color and haven’t been experiencing this throughout your life. If we want change to truly happen, then it starts by going out to vote. This is where YOU come into play. Let your family, friends, colleagues, and everyone else know the importance of voting the proper people into these different positions. I am not saying change will happen overnight and that it will be easy, but I know that when we come together and work as a team, we will be able to bring positive change in society.

Being a Young Adult during COVID-19

Myself, along with many other young adults in the rare and chronic communities, are feeling fearful, anxious, depressed, and frustrated. There are a lot of unknowns when it comes to COVID-19 (Coronavirus) and we all need to start taking it more serious, if we want to overcome this adversity.

When I first learned about COVID-19, I didn’t know what to expect. I closely monitored it. One of my good friends used to live in China (prior to the pandemic) and kept me informed about what was happening and cautioned how the US needed to prepare for what was coming. People my age and younger, think that because they are “healthy,” they don’t need to worry. Yet, this virus is so contagious that you can end up spreading it and impacting someone you know, or even worse, your own family.

I am fortunate enough not to be in the high risk category, but I do have many friends, family, and colleagues who are. They have been on the forefront of my mind and it’s tough to sit back and not be able to do more. In the meantime, I continue to try doing my part, by sharing articles on social media and discussing it with my friends and colleagues. I conveyed how some of my friends and colleagues, were afraid to leave their homes because of the risk factor.

Some are fearful there will be a shortage of medication. What happens if one of them does get COVID-19 and is rushed to a hospital that is already overflowing with many other people? The doctor may have to choose who they will help. My fear is if it’s between someone who is immunosuppressed and a “healthy” person, guess who the doctor will most likely pick?

I have been working remote full time now, for four months and I always make sure that each day I get out of the house at least once a day. Not being able to do that anymore sucks and it’s too frustrating to be inside all day. It is very isolating, especially since I live alone. I already struggle with anxiety. Being physically separated from friends and family only increases those anxious thoughts.

I know I am trying to do my part when it comes to social (physical) distancing while also figuring out different ways to both provide and receive support. I have been trying to do more journaling, FaceTime with friends and family, working out from home, and even online gaming with friends.

On top of all of this, my colleague, Anna Laurent, and I at Our Odyssey, have decided to host more virtual meet-ups through Zoom to support young adults in the rare and chronic communities. Since health conferences have been postponed for April, and May, we want to make sure to keep young adults connected.

What ways are you coping with COVID-19 and if you’re struggling, how can I help you find the support and resources you need during this pandemic?

Navigating Medical Information at Doctor’s Visits

There have been plenty of times in my life where I have been at the doctor’s office either as a patient or as a teenager when I was a caregiver to my mom, trying to grasp all the information the doctor is providing. The doctor used medical terms that I have never heard before, yet I would simply nod my head in agreement because I was nervous to ask him to explain what it meant. This goes back to my fear of being judged and luckily overtime I learned from my dad that no question is a dumb question.

One of the other challenges I have faced (and still face today) is being able to take notes while the doctor is speaking, while also making sense of each of the words being used. I can only write or type up a note on my phone so fast and it doesn’t help that I am not the greatest at doing two things simultaneously (but then again is that an actual skill?). Having a tool for even the most knowledgeable and busy patients or caregivers (like myself) makes life more manageable and can take the burden off of notetaking.

I recently spoke to one of the founders of an app called Abridge and before we started discussing the app, he shared his own story with me. He explained how he was inspired by his own family’s experience with a rare disease that he wanted to help others. The app is an opportunity to selectively transcribe the important medical parts of the discussion at the doctor’s office and even call out areas that it thinks may be included in the next steps of your care plan. Not only that, but it allows you to relisten to the conversation to better understand what he or she said while allowing you to review the information on your own time.

Abridge has a FAQ that goes over potential concerns such as data security and privacy. As a patient advocate and someone who works professionally in the health space, transparency is important in building trustworthy relationships with community members. It was reassuring to read these and know that they put the information in the hands of their users.

To be honest, I didn’t even think about how important an app like this was until I spoke with one of the founders. I sort of gave up on notetaking or trying to access information through one of the many different health portals. I felt like whatever I could take out of those visits or meetings were better than nothing. But now knowing there is a way to solve this issue for me and many other members of the rare disease community makes this even more exciting.

I know this would have been a huge help at all the doctors’ visits that my mom went to when she was still alive. I am excited for the next time I go into the doctor’s office and let the doctor know that I plan on recording it for personal use. One less phone call or follow up email goes a long way in the rare disease community.

Acting Now: Bring Young Adult Insight into Research

Lately, I have felt more motivated than ever to figure out how to get my voice heard when it comes to medical research. Over the last nine years of knowing that I tested positive for Huntington’s Disease (HD), I have only participated in two observational studies. The problem with this is that there are over 20 companies working on some type of treatment for Huntington’s Disease, yet I cannot participate whatsoever. Participating doesn’t necessarily mean joining the trial, but to work with these companies on understanding the needs of young adults who are either at risk or tested positive.

After being witness to the slow deterioration of my mom, I’m not sure pharmaceutical companies are focused on the right symptoms of HD. Yes, my mom had physical manifestations. Her balance sucked and people thought she was drunk, but perhaps more difficult for all of us were these terrible mood swings, major depression, feelings of irritability, and a lack of motivation. Luckily, despite all of this she kept her sense of humor and positive outlook on life towards the end of her battle.   

If you were to ask me what I would prefer, I would rather deal with the motor symptoms than the cognitive and psychiatric symptoms – but unfortunately, nobody is asking me or the thousands of other young adults who are at risk or tested positive for HD.

Young adults are the future of the HD community and will one day either participate in the trial or take an FDA approved drug, so how come our voices aren’t being heard now? Do we want to participate in gene therapy (one-time), spinal taps every 3-4 months, oral pill 1-2 times per day? What type of side effects are we okay dealing with? What symptoms would we prioritize from the many different motor, cognitive, and psychiatric symptoms?

I know someone is officially diagnosed with HD when showing motor symptoms, yet many young adults, like myself, wonder if there are earlier signs of HD through the cognitive and psychiatric symptoms.

 I know we cannot look too far into the future and need to remind ourselves about living in the moment, but there is a difference between being pessimistic and realistic about the future. Some people tell me I am being too pessimistic/negative when I am trying to be realistic about what might happen. It’s important to understand what I can do today to not only live in the moment but also make a difference to advance medical research in HD. Young adults, like myself, are hungry to get involved in medical research and provide our insight. To those 18+ companies out there trying to find effective treatment or a cure for HD – let’s chat on implementing the young adult voice so that we are fully prepared when the time comes that you begin targeting those of us who have tested positive but are pre-symptomatic.