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The human side of the Obamacare debate

In his first address to a joint session of Congress, President Donald Trump on Tuesday night is expected to explain how he will overhaul the Affordable Care Act.

Americans, especially those who are sick, have a complicated relationship with Obamacare. For some, the law has eased their burdens. For others, their health insurance struggles have continued.

PatientsLikeMe, a social network of more than 500,000 people coping with illness, polled 2,197 of its members in late January about the personal finance effects of the ACA on them. The poll found that 57 percent said they believe Obamacare has been helpful to people living with chronic conditions and 46 percent said they feel the health-care law needs only minor tweaks to improve it, according to the survey.

Several surveyed patients detailed how the ACA has affected their personal finances. Here are five perspectives from people with chronic conditions about how the health-care law changed their financial situations:

Patricia Allen, 63, Carmel, Indiana, living with bronchiectasis/pulmonary nontuberculous mycobacteria: "I stopped working full time because of serious quality-of-life issues that gradually became a priority to me. I now work to pay the $1,050 monthly premium for Anthem Blue Cross Blue Shield. I do not see myself as disabled and made no attempt to file for this. My husband and I are rapidly depleting my remaining 401(k) and worry that it will not last until I qualify for Medicare and Social Security. I am 63. However, there are plenty of people out there less able to pay for insurance than I. I made my choice. Both of my adult children are struggling to have insurance. Only one does and it is through the marketplace. Had ACA not included coverage for those with pre-existing conditions, I would still just be working 50 to 60 hours per week and then sleeping away the rest of my life because of extreme fatigue. That was my entire life. I would not have energy for my grandkids who are growing quickly. They are more important to me than my future financial security. I am privileged in many ways. I am so grateful that I was even able to make this choice. ACA has many, many problems, but we had to start somewhere. Now we should seek to improve, not eliminate."

Carolyn Arnold, 59, Pasadena, California, living with grand mal seizures: "I did not choose to have epilepsy and prior to the ACA, felt punished for having a pre-existing condition. I cannot control the electrical activity in my brain. Some with chronic conditions, such as diabetes, are able to control the condition with proper diet and exercise. I am not that lucky. In order to be a contributing member of this society, I must take medications for the control of seizures. Without coverage, those medications can cost up to $1,000 per month. Without them, my time on this earth would be limited."

Jeanne Graves, 53, Jackson, Wisconsin, living with fibromyalgia, depression, generalized anxiety disorder and primary biliary cirrhosis: "Raising the age of dependent coverage to age 26 was a lifesaver for our daughter. ACA is not perfect as there are stories of those who've hated it and it cost them more money in the long run, but there are just as many positive stories of all the people the ACA helped. Health care in this country is big business and complicated. The ACA didn't uncomplicate it, but it helped many more Americans have affordable health insurance. It is a mistake to just repeal it without anything to take its place."

Shawn LaVergne, 47, Lakewood, Colorado, living with severe traumatic brain injury: "I lost my health insurance because my husband was laid off. Then, I had Medicaid for five months, but that was taken away because my husband made 'too much' on unemployment which wasn't much. This doesn't take into account our other bills like keeping a roof over our heads. I am in the middle of a disability case. I can't afford insurance. If I start having seizures again from my [traumatic brain injury] or other issues, I am screwed financially. I don't have any savings; I can't work. I am borrowing money from credit cards just to make ends meet. And to insist that I have insurance (the lowest quote I received was $270 per month) with no financial way of paying and getting fined because of that is an insult. I have been paying into a system that is supposed to help when I need it, but no. This has hurt me and so many others."

Tania Storm, 57, Salt Lake City, living with multiple myeloma: "I am a 57-year-old woman with multiple myeloma. I was diagnosed 10 years ago. Due to the aggressive nature of my cancer, I was forced to quit my 35-year career in the hotel hospitality industry. I have exhausted my savings, my 401(k)s and my GoFundMe account. I have very few resources should any of my health care finances change."