CASA GRANDE — When Alicia Held was 20 years old she began showing symptoms of Cushing’s syndrome.

At the time, she was a college student and the only health care she had access to was the school’s health system, which helped only with infections and broken bones.

It was 13 years before the Affordable Care Act would become law, allowing college students like Held and non-students to continue on their parents’ health care coverage until they turned 26.

Finally, in 2009, Held was diagnosed with the rare syndrome that is caused by a tumor in the brain. It’s so rare that it affects only about two to three people per million every year. But because she didn’t have adequate heath care for the previous 12 years, her condition had worsened. She ended up having her pituitary and adrenal glands removed and is now dependent upon medication to live.

“I did not choose to have a brain tumor that disrupted my career when I was 20 years old,” Held said Friday at a round table discussion that included U.S. Rep. Tom O’Halleran, D-Sedona, along with health care stakeholders in both Pinal and Pima counties. “I think a lot of people think you are taking advantage of the system and are gaming the system. That wasn’t my choice. I didn’t choose to have a brain tumor. I think that’s really important that people know that a lot of families are struck with this. You don’t know if it’s going to be your daughter, son, wife or husband or your coworker. Someone that you care about.”

Held has been speaking about her illness and others like her to raise awareness of the importance of measures in the Affordable Care Act such as pre-existing coverage and the continued cost of medications.

“I’m really worried about the protections that the ACA provides for pre-existing conditions,” Held said. “Because one medication for me alone is $1,500 a month. I take 13 medications a day. If insurance companies are not forced to cover people like me who have pre-existing conditions — it’s not fiscally responsible for them to do so — so why would they want to cover somebody like me, with a condition which is rare?”

Because of her Cushing’s syndrome, Held is considered permanently disabled and is eligible for Medicare, but that has been an issue of its own.

Held described one problem that she and many other Medicare recipients have to go through, referred to as the Doughnut Hole. Medicare stops paying for her medication once she hits a certain amount, and she then has to pay for everything out-of-pocket. For Held, that could be upward of $8,000 before Medicare will kick back in because of being in a catastrophic category.

“She has to go through a process every year to prove that she is sick? I mean, I don’t understand it! We can do better,” O’Halleran said in an interview with PinalCentral following the round table discussion at Sun Life Family Health Center. “That’s one of the issues that when I go back, I’m going to find out why that has to be.”

O’Halleran said he dislikes the Doughnut Hole and added that it has nothing to do with the need and care of the patents.

“I think the best thing we can do with Doughnut Holes is have the ability to negotiate with drug companies,” he said.

Why not just eliminate the Doughnut Hole?

“I think it would be eliminated if we get down to negotiating with drug prices,” O’Halleran said. “Or we could get to the point where we can eliminate it and it wouldn’t have that much of a fiscal impact on the plan.

“All senior citizens that are on Medicare struggle with this Doughnut Hole. People paid into this plan for 50 years or more so we have to meet our obligation in what we told them what health care was going to be. Has it changed over the years? Sure it has. I don’t know how you can tell an 80-year-old who is on Social Security that they have to come up with more money.

“It’’s impossible. Most people who have retired, unless they have been very lucky in life, are on fixed incomes.”

Held told the round table she has to take steroids and hormones every day, otherwise she won’t be around to see tomorrow. She said that has caused her to take other medications to cope with the side effects and allow her to function.

“These are the decisions that I have to make,” Held said. “How is it going to affect my health, can my family afford this? My daughter is going to college next month. Can I afford to send her there if I have to pay for all of these medications?

“I’m glad you guys are tackling these issues because it’s very important to me and my family and the friends that I know.”

Health care costs are a real problem, O’Halleran said, adding that some families have broken up over the costs and they have even filed for bankruptcy.

“It’s devastating for a lot of families in America and the mental trauma they have to go through,” he said. “Health care in general is not where it needs to be for the American people. Our birth rate deaths are high compared to other developed nations. We are not addressing mental heath care under any plan. The cost factors on prescription drugs, while we are trying to address them, the political system is getting in the way.

“I’m a true believer that you need to sit at a table and stay in that damn room as long as you can until you can come up with a solution for the American people. Right now that’s not going on because everyone goes to their corner and says let’s get ready for the next fight in the middle of the ring. That doesn’t get health care moving forward in our country,” O’Halleran concluded.

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