5 Changes I Would Like to See in the U.S. Healthcare System

By Jessica Hanson

3 min read

As someone who has been to many, many doctors for multiple chronic illnesses and a rare disease, there are so many things I wish for in the American healthcare system.

I want doctors to understand more conditions

I have celiac disease. While I have many “classic” symptoms like GI distress, I also experienced tooth enamel damage, one of the many less-obvious symptoms.

On one visit to my dentist, he noticed that the damage had stopped progressing and asked if anything significant had happened within the last year or so. I explained that I had been diagnosed with celiac disease and had begun treatment. I hoped that the next time one of his patients was experiencing unexplained similar damage, he would suggest they speak with their doctor about getting tested.

I fully understand that doctors cannot possibly recognize the signs for every medical condition in the world, but our conditions do not exist in a bubble. Human bodies are complicated, and yes, something that was happening to my teeth was caused by a medical condition largely related to the intestines.

I hope more doctors learn about other conditions they may see symptoms of in their practice, so they can refer their patients to the proper specialist. Hopefully, others in the community searching for help would get answers faster.

I want equality for all patients

Not everyone is treated equally. Unfortunately, many patients experience racism, sexism, ableism, classism, and more while seeking help for serious conditions.

I’ve experienced sexism on several occasions. One male doctor refused to prescribe me a common pain medication (not a narcotic) for a UTI. I told him it was prescribed to me on previous occasions, and he said I didn’t need pain medication, but I should get it over the counter if I wanted it. I further explained that I was in an incredible amount of pain, and the over-the-counter option is a much lower dose that costs 15 times more compared to the prescription medication.

He still refused. I told this story on my Instagram, and my female-identifying friends who are doctors were infuriated. Other friends had a similar story, and unfortunately, many people wrote to me to say their male doctors never told them that pain medication specific to UTIs even existed. This is clearly a problem.

I want health care to be accessible for all patients

I wish obtaining health care was accessible and affordable for all – without high costs, hidden fees, or insurance tied to marriage/work. No one should fear being stuck in a toxic work environment or relationship for fear of losing insurance.

I’m very fortunate to live in New York City, where I have access to many different doctors and specialists. I’ve spoken with others in the community who live in small towns and must travel hours to see their doctor. Don’t like that doctor or need a second opinion? Maybe the next specialist is an extra 2 hours away. Between the travel, missed work, childcare, lack of time, insurance issues, and extra costs, getting necessary care could be impossible.

I want insurance companies to trust doctors

Why is it that insurance companies can decide what is medically necessary? That insurance representative has never met me and is not a medical professional. I believe that determining what type of care is medically necessary is something that should be done by doctors.

I want doctors to trust their patients

All too often, I hear from others in the rare disease and chronic illness communities that doctors don’t listen to them when they say they are in pain or are experiencing symptoms.

Once, a doctor looked at my chart and said, “What does this mean that you have celiac disease?” I looked at him, confused. “It means that a doctor diagnosed me with that condition through a blood test and endoscopy?” “Oh, well, a lot of people say they have this but are faking it.” I was shocked and didn’t know what to say. I took my test results and went to a different doctor.

What challenges have you faced within the healthcare system? What do you wish for the future of the healthcare community?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Lynn Julian Member
The last time I went to the ER, for a severe mast cell attack, I was told, by the nurse is admitting me that, “ you’re doing this to yourself.” Anyone who has mast cell disease understands that it makes you highly irritable. We call it the “HistaminIES.” That comment upset me even further, increased, my histamine level even more, and made the mast cell attack. Even worse! They all assumed I was having a panic attack, even though I’m diagnosed with mast cell disease, and treated me so disrespectfully as to cause medical neglect. 👿 That particular phrase is a trigger for me, because I have been told the same thing by other ignorant doctors on my team. The same doctors claim, “I don’t know anything about that,” when I bring up my rare diseases and conditions. Yet, they feel justified in confidently misjudging me, and convincing themselves that I am “just attention seeking.” The only way to stop this bad behavior, and medicalneglect, is to have consequences for doctors’ actions!
1. Serenats Member
 I wish this were the case. One of the things that really stood out to me was “insurance companies should trust doctors” - My insurance recently changed and things got really hectic and weren’t making sense so I tried to get to the bottom of it. I wound up speaking with several doctors who told me about the consequences they faced when they were speaking up for a patient and why they often shy away from doing it. I didn’t realize just how much was wrong in our system 
2. Gina Miller Moderator & Contributor
 <inline-mention username="Serenats" user-id="8595752"/> There really is an awful lot wrong with the amount of power insurance companies have over our healthcare. Although they typically employ doctors to help them determine what to approve, those same doctors are not akin to our own doctor as they do not know all of our medical histories, and they are...wait for it...employed by the insurance companies! It seems like a very rigged system. On top of that, our own doctors need to get reimbursed by the insurance companies, so speaking out may very well 'cost them'...Seems it all makes for a very difficult non-merry-go-round, in which patients can end up not receiving care on time or even diagnostic testing that could lead to their proper diagnoses. I, myself. was denied genetic blood testing, but was able to pay the $250 for it...it lead to my being diagnosed with cystic fibrosis, a serious rare disease that finally explained every prior mis-diagnosis, and also lead to my being put onto a gene-modulating med that is saving my life. A charity is paying my sky-high co-pays for the med. It's simply mind-boggling and anger-provoking when I realize that many patients cannot afford to pick up costs of tests or treatments that insurance won't cover. Thank you for your comment...we must all speak up! Sincerely, Gina Miller (Team Member)