As Donald Trump takes office, he’ll be tasked with leading the nation on health care initiatives and influencing the future of the Affordable Care Act, also known as Obamacare. With the Senate’s recent vote against elements of the ACA, including the ensured coverage of those with pre-existing conditions, it’s an uncertain time for many people living with chronic illnesses — some who may be looking forward to changes being made, and some who may be concerned about losing policies they needed. Politics aside, the quality of health insurance a person with chronic conditions receives is often a matter of life or death.
So, we asked people with chronic illness what they want President Trump to know about health care and what they need from their health insurance. As he hopefully works to create a system that is affordable and accessible for everyone, people whose health is affected everyday by those policies deserve a seat at the table. These are their stories, concerns and ideas.
Here’s what the community shared with us:
1.“My medical bills are twice my college tuition, and I’m afraid that one day I’ll have to decide which one is more important.”
2.“Not everyone has a diagnosis. My doctors do their very best to help me, but it doesn’t help when insurance turns you down because you don’t have a specific diagnosis. I don’t fit into any of their little boxes. I’m sorry, but I haven’t been discovered yet. That doesn’t mean I should have to suffer or even die because I can’t afford a treatment on my own.”
3.“Insurance companies should not have the authority to deny anything a doctor orders for their patients. I’ve been without any pain meds for a month now because my insurance won’t pay for the medicine my doctor ordered.”
4. “Open enrollment, being able to receive care from specialists in other systems, and guaranteed coverage, are some of the most important policy measures of the ACA. These aren’t just ‘perks’… These measures save lives.”
5. “Once again, from all of us, we are not drug seekers! We are just trying to live our lives with a minimum of pain and a maximum of functionality.”
6. “My babies need me to have a better quality of life so they don’t miss out on things. It’s not just ‘my’ pre-existing condition, it’s my family’s, too.”
7. “I’m already without coverage for my chronic illness and fighting for disability benefits. We aren’t lazy; we are sick and we need help. End of story. Many of us don’t qualify for coverage under the ACA or Medicaid — we fall between the cracks. We need medical coverage and can’t get it. We need treatment, and we can’t get it. And we are not going to just die off quietly. We will fight.”
8. “I estimated that my annual prescriptions alone would cost roughly $50,000 without insurance. With those medications, I am capable of working full-time and providing for my family without government assistance. For my autoimmune disease, one out of three patients are out of the workforce within five years. Many are on permanent disability. Not only does a repeal of the ACA prevent me from getting sorely needed medical care, it could easily result in me being permanently disabled and on the government’s dime before I turn 40. This costs you money. Speaking in capitalist terms, would you rather write a paycheck to a healthy worker? Or a disability check to a chronically ill citizen?”
9. “I applied for disability five years ago, with over 15 conditions. I did not ask for this, I do not want to be like this. I would give anything to work and be a ‘normal’ human being. Without my insurance I will die… I am not worthless or hopeless. I matter to someone. Without insurance I cannot have the surgeries and medications I need to walk, breathe without pain, keep my mental illnesses from harming myself or others.”
10. “I’m super scared to lose my insurance, and I fall in the grey area of too sick to work, too healthy for disability. So what happens then? I know I won’t be the only one in this position either.”
11. “I need him to understand that having insurance and having access to healthcare are not the same thing. Test, medications, and visits to the doctor are very expensive and with the high costs of these things, out of pocket, it limits the actual ability to see a doctor. Affordable insurance with lower deductibles and affordable medical help is a necessity, not a luxury.”
12. “This isn’t just some political issue, this is life and death. If he repeals the ACA and I’m without insurance it will cost roughly $8,000 a month for my medicine. This isn’t just paperwork, this is do I continue treatment or start planning my funeral? This isn’t ‘oh you’re being dramatic.’ This is my daily life.”
13. “Stop making insurance so expensive. It’s not like we have a choice to be sick. Make it more affordable. Health insurance and prescriptions. I’m not asking for a fancy car, big house, or a vacation, I’m asking to have good health at a less expense!”
14. “What takes ‘normal’ people moments to accomplish can take the chronically ill hours. What some consider to be only an addictive drug is considered a means to sustainable activity for the chronically ill. What some consider to be too many appointments is considered a to be a light week for the chronically ill. Please bear us in mind when making your decisions. We aren’t heard the way others are heard. We need you to acknowledge and be considerate of us. Consider us. We are human beings.”
15. “Have a new system ready to replace [the ACA] that never discriminates against those with a pre-existing condition. Make it illegal for drug companies to advertise on TV, just like cigarettes. Enforce marketplace competition so drug companies make their prices reasonable for all. No medicine should ever be $100 per pill or thousands of dollars per month. Promote healthy living and maybe cover naturopathic doctors so diseases don’t have to always get worse.”
What do you want our new president to understand about health care and how it affects your life with chronic illness? Let us know in the comments below.