Heart and stethoscope

A micro-deletion with a macro-barrier to healthcare

Access to healthcare is a human right, so why doesn’t it seem that way? Health inequities stem from the numerous barriers to healthcare that disproportionately affect our disadvantaged communities. There is an unfair distribution of resources across populations based upon race, socioeconomic status, culture, gender identity, disability status, and many more factors that contribute to the major differences seen in health outcomes for particular communities. Barriers to healthcare are not a new topic of discussion, but they shouldn’t need to be a topic of discussion because there shouldn’t be any barriers to begin with; and yet, here we are in the year 2020 with staggering data portraying the differences in mortality rates between different groups. We still have a long fight ahead in order to achieve equality, but it is one that is worth fighting. My brother is one out of millions of people who will thank us for it.

My brother, Brady, is cognitively disabled with a laundry list of congenital issues and mental illnesses, which are unfortunate consequences of having 22q11.2 micro-deletion syndrome. He is unable to perform typical activities of daily living, so he needs someone with him at all times of the day. In the past he worked at a local fitness gym, where he got to play his part and feel like he was involved in society. Thankfully his supervisors were always understanding on days when he didn’t show up for his shift due to heightened anxiety or a very sudden change in his priorities.

There are many policies in place to protect disabled individuals from discrimination and to provide them with extra accommodations in the workplace, but we still have a long ways to go in terms of making healthcare more accommodative for people like Brady. After turning 21 years old, Brady’s Pediatrician informed us that he had “aged-out” of the Pediatrics department and that it was time for him to find a new doctor. One year later, my brother has yet to find a new physician that is willing to take-on his complex medical history and unpredictable future. He has been passed from one referral waitlist to the next because, more often than not, he gets rejected from the physician who feels that they’re not suitable to undertake his care. My family advocates for my brother every day to ensure that he gets the care that he needs, but what can be said for other people like Brady who don’t have a family to advocate for them? 

A young busker in Mykonos, Greece, 09/2019

A large fraction of individuals within the homeless population are cognitively disabled; furthermore, severe mental illness is a major determinant of homelessness. It shouldn’t be surprising, then, that homelessness goes hand-in-hand with decreased access to healthcare and reduced life expectancy.  Those with severe cognitive disability and/or mental health illness are particularly at risk of falling through the cracks of our healthcare system, and without proper medical care this could mean a sentence to “the streets” due to the negative impact on their ability to function in society. Without a family to advocate and care for him, Brady’s year-long gap in access to healthcare could have dealt him a similar fate, which in-turn would have exacerbated his underlying medical conditions. The poor health and social health outcomes for our disabled and underserved communities are strong indicators of the holes within our healthcare policies that were originally intended to protect these vulnerable populations. There are some people, perhaps people like Brady, who are situated along high-traffic areas hoping for a few dollars-worth of donations to pay for their dinner because they were unable to get adequate medical treatment for their disabling ailments. Perhaps the young girl sitting outside with her coin cup would be going to school if she had people to advocate for her wellbeing. Maybe the war veteran standing on the side of the freeway begging for spare change would be safe at home if he had proper treatment of his physical disabilities and PTSD; and maybe the man with 22q11.2 deletion syndrome would be working at his local fitness gym rather than living in fear in the homeless shelter if he had received the antipsychotic medication that he needs to function.

Our current healthcare system places disabled individuals at an unfair disadvantage. Read that again. Disabled individuals, who already face major disadvantages in society, are alienated even further by the very system that is supposed to protect them. The good news, though, is that this system is dynamic and capable of change. Physicians and other healthcare workers have a duty to advocate for their patients, and they must take action to diversify their patient demographics and bridge the healthcare gap for disadvantaged groups. Physicians should be urged to self-evaluate for any implicit biases that could unintentionally interfere with their patient’s health outcomes and/or prevent them from taking-on certain patient’s cases. Implicit bias examinations can be easily taken online, and doing so would allow physicians to make a conscious effort towards eliminating healthcare inequities.

From Brady’s perspective, living a “normal” life is impossible, but living a high-quality life is achievable with proper medical treatment and advocacy. No one should be denied the right to having an advocate, and for many people, their physician is their only advocate.

Brady, 06/2018

(All medical information was released by Brady for use in this article, in accordance with HIPAA.)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s