- HCMA Newsletter Archives
- Patrons and Supporters
- My HCM Experience - The Faces of HCM/Share Your Story
- Founders Blog "Big Hearted Blog"
- Is it acceptable to bully the disabled?
- To tell or not to tell: My choices regarding clinical trials
- June 16 the day, I lost part of my mind and part of my heart
- Getting to the Heart of the Matter
- Life with HCM - How we lie to hide our pain
- When a loved one dies suddenly... again and again and again
- Why it is important to know what those letters after a doctor's name mean?
- The Day that changed my life
- The Affordable Care Act: Working to provide care!
- 24 weeks as a clinical trial participant... a look back and forward!
- Lisa, We have your heart. How soon can you be here?
- Tell me what it is you plan to do with your one WILD and PRECIOUS life?
- Life with a Pre-existing Health Condition Pre ACA
- The Day that Changed my life - June 12, 1995
- Is it the “Better Care” Act or a shell game?
- Reunited with my best friend and worst enemy
- Heart,soul... and a little prayer
- Thankful for the gift of bravery
- The Last Gift
Life with a Pre-existing Health Condition Pre ACA
This is not a political issue, it’s a human issue.
When you are born with a genetic mutation that leads to a disease that is chronic for which there is no cure the American experience isn’t what you read in story books. I am one such person, I was born in 1968 in the United State shortly before our country opted to permit insurance companies to operate as for profit entities. .
My sister had open heart surgery in 1964 and the total bill was under $750.00 which was expensive, but was not something that would bankrupt a family. In February 2017, I had a heart transplant, the total bill was $396,000, and the negotiated amount was $198,000. This amount could bankrupt a family. The good news is I have excellent insurance and I have always had to maintain insurance, at the expense of a great many other things in life. I believe in personal responsibility to maintain coverage, but for some it was simply not obtainable prior to the ACA. No, I will not call it Obamacare. Why will I not call it Obamacare, because yes he was in office and he signed it into law for that I thank him, thousands of men and women fought for 100 years for a better health care system for the USA.
When I was young, I found out that my parents’ health care plan would not accept me after the age of 18, not even as a student. They were self-employed and held a private policy at the time. I needed a full time job to ensure I had coverage. I was blessed to find a great job with a fantastic training program and health insurance. I moved from one employer to a different one where I spent 18 years. I had great coverage there, in fact I became the health plan administrator (see the video for more information on that). At the age of 21, I had a stroke secondary to an infection created during dental work, a known risk for heart patients. I now had 3 pre-existing medical conditions, hypertrophic cardiomyopathy, stroke (with lasting brain injury), and blindness in my left eye. I thought many times about leaving my job I knew thanks to COBRA (enacted in 1985) I could pay to continue my coverage for 18 months, but not every employer had health coverage and I was branded with a Pre-existing condition, a lapse of coverage would lead to no coverage of any of my chronic conditions. At one point I tried to purchase a private policy, I was declined. My husband and I wanted to branch out and start a second location of my father’s business. We could not because I could not obtain health insurance.
I lost opportunities to start business ventures because the risk was simply too great. The risk was not financial, it was my life. In 2005, I left my job to work full time to help others with hypertrophic cardiomyopathy and relied on my husband’s job to provide insurance. One employer was fantastic, but then he moved to a company who was as harsh as they come, they purchased the most inexpensive policy they could with deductibles so high it made it nearly impossible to access care. They would complain it was about the ACA, but it was not, they actually renewed a policy a month ahead of time just to get 11 more months to have coverage not covered by ACA. Thankfully, my husband found ethical people to work for with great coverage in time for my transplant.
Do we want to go back to a time where Americans were fearful to change employment for fear they could have a gap in coverage?
Today May 9, 2017 the US congress has passed a bill updating the ACA by adding provisions that will permit states to determine in pre-existing conditions can be subject to surcharges of up to 30% if there is a gap in coverage. These gaps normally occur because people cannot afford premiums, thus adding to the health burdens of these mid to low income families. These new proposed changes jeopardize basic health care such as:
1. Outpatient care—the kind you get without being admitted to a hospital
2. Trips to the emergency room
3. Treatment in the hospital for inpatient care
4. Care before and after your baby is born
5. Mental health and substance use disorder services: This includes behavioral health treatment, counseling, and psychotherapy
6. Your prescription drugs
7. Services and devices to help you recover if you are injured, or have a disability or chronic condition. This includes physical and occupational therapy, speech-language pathology, psychiatric rehabilitation, and more.
8. Your lab tests
9. Preventive services including counseling, screenings, and vaccines to keep you healthy and care for managing a chronic disease.
10. Pediatric services: This includes dental care and vision care for kids
The UNITED STATES should not be a patchwork of healthcare rules, we are all entitled to equal protection under the law. The loss of these essential services are capable of endangering the lives of millions of people.
This is not a problem of political parties this is a problem of greed and power. I did some quick math, the CEO of ONE insurance company has a compensation plan that requires 1,700 families pay annual premiums of $16,000 per year (the average cost for a family of 4) to support his salary. Imagine how many people could be treated with HALF that money.
The only way this will change for the better is for people to speak out. Please call your congressmen and Senators today and tell them that healthcare that must be accessible to ALL is the goal we should all be working for, politics be damned this is time to come together to form a more perfect union, not divide it.