They have injured spines, costly cancers and risky conditions including epilepsy and diabetes. But what many people with chronic health conditions are focused on this week is taking place in Washington.
As they watch the Senate's fast-changing health care debate, they're worried about whether they will still be covered and whether their premiums will go up or down.
"The debate scares the hell out of me," says Doug Hoffman, a retired Minnesota police officer who says his health premium is his biggest cost.
Senators rejected a measure Wednesday that would have repealed major parts of the ACA, but that was scant relief to some of those with health issues. Senators can still amend a more basic bill in ways that pose particular risks to premium costs and coverage if they have preexisting conditions.
The plan still under consideration would eliminate the requirement that people have insurance or that employers provide it. That would increase premiums by reducing the incentive for healthy people to sign up for insurance and make it harder for insurers to offset the cost of covering sicker ones.
If people aren't required to buy insurance, any replacement legislation needs to have "strong incentives for people to obtain health insurance and keep it year-round," the Blue Cross Blue Shield Association said in a statement Wednesday.
Without that, it would be impossible "to avoid steep premium increases and diminished choices that would make coverage unaffordable and inaccessible," BCBSA said.
That doesn't mean the current system is working either, ACA critics say.
"The individual mandate was supposed to force back into the market the young and healthy people that Obamacare has overcharged," says Avik Roy, a free market health-care expert who has advised presidential candidates and other politicians. "But that hasn't happened; those young and healthy individuals have in large part stayed out of the market."
But for those with current health issues, the whole debate is worrisome.
Hoffman, 55, is a Republican who is worried that if both parties don't work together, his premiums could go even higher. He retired due to a knee injury, isn't eligible for premium assistance and finds health insurance is his biggest cost.
"Partisan politics will not work," says Hoffman, who works only part time. "If the Democrats think by not participating they will win, they are wrong. If the Republicans force feed a plan, they are being just as shortsighted as the Democrats in the opposite direction."
• Medicaid coverage. The fate of the expansion of Medicaid under the ACA, as well as overall funding for the program remains uncertain. Conservative Republicans favor eliminating the expansion that gave coverage to most people earning below poverty in states that opted into it. More moderate Republicans oppose deep cuts and support a more gradual phase-out of the expansion.
Todd Gregory, 50, who has debilitating headaches from three brain surgeries, already finds it hard to pay the out-of-pocket costs for some of the 13 medications he has to take.
"Should I pay for the medication or not have any food for two weeks?" asks Gregory, of Georgetown, Kentucky.
Now he's worried about what will happen to his Medicaid coverage if any of Congress' ominous cuts to the program make it into law.
"I don't wish a brain injury on anyone, but i almost wish someone in their family might need (Medicaid) when they decide how to spend the money," says Gregory, a member at the patient networking and research site PatientsLikeMe.
• Pre-existing conditions. Senators will have a chance to add amendments to any bill being considered, which could put guaranteed coverage for those with health problems in jeopardy.
In South Carolina, high premiums and coverage for those with pre-existing conditions are the big concerns of Sally Whitson and her daughter, Jane, who has Type 1 diabetes. Jane just turned 26 and the family was able to get a six-month extension on her insurance for $383 a month,
"If pre-existing conditions are not covered and rates skyrocket we might not be able to keep her covered," says Sally Whitson. "We are not rich. $383 a month is an expense we bear because the alternative is that she would die."
Before the ACA, Jane Whitson had coverage through South Carolina's high-risk pool.
"It was a terrible experience," says Sally Whitson. "Returning to the high risk pool is high risk for people with chronic heath issues."
Roy, co-founder and president of Foundation for Research on Equal Opportunity, thinks health reform could lower premiums if repealing the mandate is coupled with other improvements to the law. But he blames Democrats for "doing their best to block regulatory reform using parliamentary maneuvers."
"Why can't we begin to see the human side of this?" asks Sally Okun, a vice president at PatientsLikeMe. "What worries me the most are attempts to parcel out the kinds of supports people rely on for their health and well being. "
Whitson has been watching the health-care debate closely, as she worries about her daughter and the many hearing-impaired children on Medicaid she treats as an audiologist.
"Health care is not a deficit reduction issue and it needs to be bipartisan," says Whitson. "Maybe my daughter could have the same health plan as our Congress people and their families. "
Laura Porter of Sherburne, New York, is disabled with a spine injury, epilepsy and diabetes, and she worries what will happen to her Medicaid coverage if she has to go back to a nursing home. But she also worries about high ACA premiums if her grown children have to pay for their own insurance instead of getting it through their employers.
"The health insurance business is just crazy," says Porter, also a PatientsLikeMe member. "You can't afford to pay for it, but you can't afford to not have it."
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