Health Care Changes(what is important to you)

[Rebjane]

Looking for input from others with CF about what would be important issues about the changes that will take place this year in the health care market. For our family I am most concerned about making sure person with pre existing conditions do not get dropped from the health insurance or discriminated against; having my child with CF covered til she is 26 under our family's insurance and not having lifetime maximum. I do think improvements are needed in our health care program(as with anything) >I am not looking for arguments just truly interested about what people with CF are MOST concerned with(as CF is just so complicated) I have been in the health care field mostly my whole life(RN 20+ years) and CNA since high school. So I have seen alot of changes. What I do know are people are people and are truly most vulnerable when they need health care the most(when they are sick). I plan on calling my senator to give my opinion but learn from others as well. As an RN I feel that health insurance is a misnomer. 100% of people will die. SO they will need some form of health care services. THoughts?

https://www.cff.org/News/News-Archi...cate-Policymakers-on-Needs-of-People-with-CF/

 

[Ratatosk]

Pre-existing conditions, coverage until age 26, no lifetime caps are pretty much the biggies for us.

We've been fortunate to DS is relatively healthy -- prior to Orkambi, I believe our pharmacist said he and his other cf customers were $80,000 a year patients..... The first NICU stay for 4 weeks was $249,000, another surgery for an obstruction was also $250,000 6 years later --- so the return of caps on coverage truly frighten me.

On a more minor not, when I was younger, working an entry level job, newly married --- we didn't have coverage for contraception. If I went to the local doctor it was several hundred dollars every year, so I went to PP which had a sliding fee scale.

I know locally some people have gotten their medications from Canada or gone to Mexico when they've gone south for the winter. I heard mention of not allowing prescription drug coverage from Canada....

 

[Rebjane]

Thank you! When I first got a job as a nurse, I was 22. I worked full time"per diem" and the hospital would not give me health insurance. Worked 9 months with no health insurance until new management took over and 2 other nurses in the exact same situation demanded they hire us offically full time and that we get benefits including health insurance. I also went to Planned Parenthood as a young adult for care; simple stuff like UTI and exams.

 

[Ratatosk]

After I graduated from college, most places didn't offer health insurance. I worked as an administrative assistant in different areas --- tv station, hospital and insurance company.... And didn't get health insurance until I was 25 years old and even then, the deductible was cost prohibitive -- $200 was a lot of money to someone earning minimum wage. Kinda funny today we have a high deductible plan of $2,600, but we've been able to stash money in an HSA to help defray those scary beginning of the year prescription costs.