My “Pre-Existing Condition” Started at Birth – How I Fight for Access to Care

By Bobby Hall

About Bobby Hall: Bobby Hall is a social media influencer and activist who lends his voice to raising awareness for pulmonary hypertension. He also works for Project Angel Food, an organization whose mission is to feed and nourish the sick as they battle critical illness. Volunteers and staff cook and deliver nutritious meals, free of charge, to homes throughout Los Angeles County to alleviate hunger, prevent malnutrition and return their clients to health. Follow him on Twitter at @BobbyTBD.

The insurance industry has played a major role in my becoming a health care advocate. In 1991, at the early age of four, I was diagnosed with anomalous pulmonary venous drainage, which required two open-heart surgeries. I was thrust into the world of critical illness, which also meant being thrust into the world of pre-existing conditions. My mom was a single mother raising two children, confronted with the harsh reality of the American health insurance industry.

Battles to pay for costly health care needs can follow us throughout our lifetimes. From the age of four when my survival meant to forever live with this pre-existing condition, to the age of 31 I have struggled to find coverage. Now at 31 I am struggling to find coverage as I struggle with my mental health care needs. Insurance companies continue to play both doctor, pharmacist, and insurance company, setting standards and regulations based on their profits, instead of what is potentially lifesaving, and the patient is the one who suffers. The only two individuals in a healthcare scenario who know what is best for the patient is the provider and the patient who are in the room day after day working to improve the quality of life for the patient.

For the past five years, and to be honest for most of my life, I have struggled from depression. More recently I was diagnosed with Borderline Personality Disorder, Obsessive Compulsive Disorder and Posttraumatic Stress Disorder. I’ve struggled through countless misdiagnoses throughout the past few years and with the help of my psychiatrist, I have tried a few different medication regimes to get myself to a healthy mental state.

My psychiatrist, who has worked with me every day for the past couple of years, has tried to put me on a few different selective serotonin reuptake inhibitors (SSRI), a standard class of antidepressant medications. They weren’t working for me. I was struggling from side effects and my overall emotional state wasn’t improving. My psychiatrist knew of a new type of antidepressant that didn’t fall within the SSRI class of antidepressants that was known to work well with far fewer side effects called Trintellix. The price point would be a bit higher, but that is why I have insurance right?

My insurance company rejected the medication. They said my doctor could easily put me on an SSRI for depression that would be cheaper. I was frustrated, angry and upset. My doctor had put me on an SSRI already, multiple in fact. They didn’t work and I was struggling to keep my head above water. I was in four hours’ worth of therapy every week, but I knew I needed this added help to improve and maintain my health.

My doctor told me that Trintellix would have fewer side effects that might make it easier for me to digest food, have less weight fluctuations and eliminate some of the other negative impacts the medications were having on my day-to-day life. I felt so excited to have something new to try that may help with my mood, but also improve my quality of life. Then the insurance company rejected the request. Who did the insurance company think they were to decide what medication my doctor should put me on? The insurance company is not here to play doctor, pharmacist, judge, jury, and executioner. This is how we know our health insurance industry is broken. When they stand in the way of people struggling to get back to a healthy way of life. When their bottom dollar comes before making sure someone struggling with severe depression gets the help they need. That one medication ended up costing me the same amount as my other five combined.

It’s issues like this that have led me to be an advocate in the field of health care. Last October leading up to Pulmonary Hypertension Awareness month I stumbled across the Pulmonary Hypertension Association’s (PHA) efforts to raise awareness for their organization, its mission and their community. I was touched by the grassroots efforts, low-cost methods used by the organization and the enthusiasm behind their cause.

I decided to participate in the awareness month social media campaign. Within less than a week the Pulmonary Hypertension Association’s social media manager, Tommia Hayes had reached out to me personally and asked me why I was interested in their campaign as well as the organization.

PHA’s mission follows the exact needs I think patients require from an organization that is thoughtfully serving its community. Providing a full suite of programs from support groups for patients and caregivers, specialty care resources, lifesaving early diagnosis awareness and education programs to name a few.

To top it off, as a professional fundraiser myself for a nonprofit based out of Los Angeles, Project Angel Food, that feeds and nourishes the sick as they battle critical illness I was beyond impressed with the professionalism of the Pulmonary Hypertension Association staff.  They utilize every tool at their disposal and in unique ways. I wouldn’t have found the organization if it weren’t for their creativity, quick cultivation and incredible appreciation.

It is my sincere hope that by raising awareness for organizations like PHA, that others will not have to struggle as much to find the care and support they need when facing critical and chronic illnesses. My struggle began many years ago when a birth defect sentenced me to a lifetime with a “pre-existing condition” and continues today as I face mental health struggles, but this story begins, and all too often ends each day in America when countless people can’t find, access, and afford the medication, care, and support they so desperately need.

Take action TODAY to speak up for people living with chronic illnesses like PH. You can make a difference with two quick emails – PHA makes it easy to contact Congress.

  • First, tell your U.S. representative that “step therapy” rules, which require people to fail on less-expensive therapy before getting the medication their physician prescribed, can be dangerous or even deadly to those with PH.
  • Next, protect patients’ rights to financial assistance. Health insurance plans in 41 states now refuse to accept premium and co-insurance payments from financial assistance nonprofits. This can force people with PH to have to find alternate coverage or go without life-saving therapy. Tell your U.S. representative that many depend on this assistance! 

 

 

PH Bill

This post is part of PHA’s The Right Heart blog series. Find out how you can share your story. Click here.

2017-11-08T20:59:31+00:00 November 8th, 2017|