Losing the ACA Would Leave Me With No Practical Options

I have a rare hereditary blood defect. My condition is life-threatening and the daily medication is very expensive, which is hard on our family's finances. Over the past 20 years obtaining health insurance has become increasingly difficult and stressful, a constant battle. The outcome has almost always resulted in outrageous fees or a complete denial of coverage. I am willing to pay a fair market share but when a provider demands more than my husband's salary, what am I to do? One of the reasons my husband took his present job was because I was covered under the company's health insurance. However, last year the cost to us to continue covering me through his workplace became prohibitive at almost $1,000/month. It was a great relief to us when the Affordable Care Act picked me up, providing me very good health care at an affordable price. The possibility of losing this valuable benefit is discouraging and frightening, as it leaves me with no practical options.