With the new administration, questions of coverage, the ACA and how it effects those of us affected by rare disease have been causing major concern.
Today at the 2017 Legislative Conference for Rare Disease Day (#RareDC2017), healthcare was discussed from representatives on both sides of the aisle.
First, the good news:
Both sides agree that those with pre-existing conditions should be protected and never denied coverage.
(Gee… thanks guys! What a relief.)
Then, the confusing news:
While Wendell Primus, Senior Policy Advisor on Budget and Health, Office of Leader Nancy Pelosi, states that more people are insured than ever, that statistic doesn’t necessarily help much when in some instances, the options for coverage suck. Let me explain:
As Cheryl Jaeger, Principal, Williams & Jensen explains, coverage is only as good as it’s plan. While over 90% of people might be covered, the options for coverage are not always great because insurance companies are opting out. It is a major problem when insurance companies are saying they just won’t participate in the market place next year.
current Policy makers have their work cut out for them.
While the experience with ACA varies greatly, depending on state, area of state, disease or condition, employment status, etc. I want to offer my own situation, which of course, informs my opinion on the issue.
While I am covered through the marketplace, it costs me over $500 a month (with dental and eye), for a $3200 deductible and a $7500 out-of-pocket max, with only five doctor’s visits covered. There is a $35-65 dollar co-pay for every “covered” visit, then I pay out-of-pocket after that. I chose the cheap plan.
For dysautonomia with complications from Lyme, on a good year I may only go to the doctor five times. However, symptoms can flare up, causing me to go to the doctor at least once or twice per month during a bad year.
Before that, I had a year where I went to a doctor almost once or twice per week. Not to mention flare-ups do not work around the Jan-Dec healthcare cycle.
So for some states, the options for people like me are: Crappy insurance during flare-ups but a premium that doesn’t make me go broke, or a premium that makes me go broke for insurance that is only “OK” and that I may not even use very much that year.
While I am anxious for improvements to be made to the ACA because premiums are insane and options are poor, I am hopeful in listening to these policy makers today, because both sides know there are challenges to be addressed.
