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A key goal of the Affordable Care Act is to help people get health insurance who may have not been able to pay for it before. But the most popular plans – those with low monthly premiums – also have high deductibles and copays. And that can leave medical care still out of reach for some.

Renee Mitchell of Stone Mountain, Georgia is one of those people. She previously put off a medical procedure because of the expense. But as the threat of losing part of her vision became a real possibility, she sought an eye specialist at Emory University, who told her she needed surgery to correct an earlier cataract procedure gone wrong.

The eye surgery is not the scariest part, she said. Cost is: “further copays [and] more out-of-pocket expenses.”

Mitchell is generally pleased with her insurance — a silver-level Obamacare plan. It’s the most popular type of plan with consumers because of the benefits it provides for the money. But she still struggles to keep up with her part of the bills. She is not alone.

“One in four adults who were fully insured for the whole year still reported they went without some needed medical care because they couldn’t afford it,” said Lydia Mitts, a senior policy analyst with the health care advocacy group, Families USA.

Mitchell still owes more than $20,000 for several years of medical expenses, with more debt accruing in interest each month. “If not for having availability on my credit card, we’d probably be in the poorhouse,” Mitchell said.

If she undergoes that eye surgery, she said, she’ll owe another $4,000 – the deductible for the operation.

“It’s a very big burden,” Mitchell said.

A recent study released by Families USA shows that a lot of people with coverage like Mitchell’s feel a similar burden, and a poll from the Kaiser Family Foundation finds the same thing. The majority of people who buy insurance on state or federal exchanges pick silver-level plans, which often carry a lower monthly premium, but may still have a high annual deductible – $1,500 or more.

“Consumers are still struggling with unaffordable, out-of-pocket costs,” says Mitts.

Many people in that situation skip follow-up care and don’t fill prescriptions. Mitts said that only adds to long-term complications and costs.

But it doesn’t have to be that way, she said. Plans in some states, including Pennsylvania, Texas, Florida and Arizona, have recently done away with deductibles on some silver-level insurance plans. And for certain basic services, including doctors’ visits and generic prescriptions, other plans are requiring only a small copay.

Still, while copays, deductibles and co-insurance weigh heavy on Renee Mitchell’s mind, they’re not her only insurance concern. Her monthly premium is also getting more expensive. This year, she said, it jumped by about $100 a month.

Mitchell wants to be clear, though: She’s not looking for a handout.

“People seem to think that we just want something for nothing,” she said. “I worked a lot of years. I took an early retirement to take care of my family. It’s not my fault, so to speak, that I’m here.”

This story is part of a reporting partnership with WABE, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

It will be up to state officials and Congress to help consumers who can’t afford health insurance if the Supreme Court strikes down health law subsidies for millions of Americans, Health and Human Services Secretary Sylvia Burwell said Wednesday.

“The critical decisions will sit with the Congress and states and governors to determine if those subsidies are available,” Burwell told the House Ways and Means Committee.  The secretary told Congress earlier this year that the administration has no authority to undo “massive damage” that would come if the court invalidates the subsidies in the online marketplaces, or exchanges, which the federal government operates in about three dozen states.

By the end of this month, the court is expected to issue a ruling in the case, King v. Burwell.  More than 6 million people could lose those payments and many more residents could see their premiums increase because of the havoc the loss of subsidies would cause in the market.

The challengers argue that one clause in the law says those federal payments would be available to consumers only in states that run their own exchanges. But the administration has argued the legislative intent was to make subsidies available to customers in every state, regardless of how its exchange was established.

During Wednesday’s hearing, Republicans pressed Burwell to indicate what type of legislation President Barack Obama might sign to restore subsidies if the court rules for the challengers. Many Republican lawmakers have acknowledged that they would like to find a way to offer a temporary option to help consumers, but they have failed to coalesce around a specific proposal.

Burwell said while the administration would be open to considering alternatives that make health care more affordable and accessible, the president would not sign legislation from Sen. Ron Johnson, R-Wis. That bill would maintain the subsidies for current beneficiaries through August 2017 but repeal the health law’s requirements that most individuals get coverage, that larger businesses offer insurance to their workers or pay a penalty and that plans provide specific types of benefits.

“Something that repeals the Affordable Care Act is not something the president will sign,” Burwell said.

A recent report from the American Academy of Actuaries said some changes favored by Johnson and other Republicans, such as eliminating the individual mandate, “could threaten the viability” of the health insurance market for individual plans.

Echoing comments she made last week, Burwell said the administration will work with states to help mitigate the consequences for consumers if the Supreme Court ruled against federal subsidies.

The session was billed as a hearing on the HHS budget fiscal 2016 request, but it quickly veered to Republican attacks on the sweeping 2010 health law while Democrats rushed to defend it.

“Whatever the Supreme Court decides this month, I think the lesson is clear: Obamacare is busted. It just doesn’t work. And no quick fix can change this fact,” said Ways and Means Chairman Paul Ryan, R-Wis. “Its very linchpin—its central principle—is government control. That means higher prices, fewer choices, and lower quality.”

Rep. Sander Levin of Michigan, the panel’s ranking Democrat, replied in kind. “What’s busted,” he said, “is not the ACA but  [Republican] attacks on it. Endless attacks. Never coming up with a single comprehensive alternative all these years. So you sit as armchair critics while millions of people have insurance who never had it before. You’re livid because it’s getting better.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

In the U.S., an average of 21 people die every day waiting for an organ transplant, and the wait times can range from four months for a heart to five years for a kidney, dependent on the how sick the patient is, according to the Organ Procurement and Transplantation Network (OPTN) and the Gift of Life Donor Program.

But public policies have done little to close this gap between supply and demand, according to a study published earlier this month in JAMA Internal Medicine.

In this look at the national impact of a variety of state policies on organ donation, researchers examined for the first time the effects of policies in 50 states between 1988 and 2010.

“We found that state policies … during the past two decades had little to no effect,” the authors wrote.

The only meaningful gains, they noted, resulted from state revenue streams to support recruitment activities such as community outreach, worksite campaigns, and efforts to educate physicians, lawyers and other professionals who may play a role in promoting organ donation. Such dedicated resources were associated with an increase of about 15 transplants per state per year, or a 5.3 percent boost in donated organs.

Other policies they examined, such as leave-of-absence programs for government workers, school-based organ-donation education programs and tax benefits to help offset the costs of donation, had only minimal impact.

The data used in the study came from the United Network for Organ Sharing and the federal procurement network, which tracked organ donation signups and transplants and researchers tied that information to state policies.

“The next step in research would be thinking through alternative policy designs,” said Erika Martin, a study author and assistant professor of health policy at the University of Albany, N.Y. “Hopefully our study can start a conversation about how these more passive designs aren’t pushing the envelope.”

Some experts suggest that efforts to boost the number of living donors could address the shortfall.

For instance, while about 123,193 people are waiting for organ transplants, nearly 102,000 of them need kidneys – mostly because of complications from diabetes, according to Sigrid Fry-Revere, president of the American Living Donor Fund. She was not associated with the study. And kidneys are likely organs for living donation because the donor’s remaining, healthy kidney will compensate.

But here’s where some say public policies fall short.

Organ recipients’ health insurance covers medical costs for the donors’ surgery. If the recipient has the financial means, he or she can, reimburse the donor for travel and lodging costs, but they can’t — by law — pay for anything else. Donors are then responsible for their post-medical care costs, lost wages, spousal travel and lodging costs and even the possibility of losing their job – between $5,000 to $20,000 in additional costs on average — which make donation financially challenging.

Anastasia Darwish, executive director of the American Transplant Foundation, which has helped 349 living donors cover these costs, is among those who say current policies are inadequate.

“This isn’t about compensation, it’s about removing the barriers toward living donation,” said Darwish, who was not involved in the study.

Some state policies try to offset this burden with a tax credit for those who donate an organ, but it equates to only about $600 – a small share of the donor’s costs. But, according to a 2012 study, it would take around $10,000 to motivate someone to donate an organ. In addition, transplant advocates say that getting the tax credit requires filing complex tax forms and many people may not know the program exists.

“The people that need the help are people that a measly tax credit would not help a year later,” Fry-Revere said, whose group provides grants to donors for after-care and lost wages. She suggests a system where a kidney donor could donate to someone on the top of the wait list in exchange for getting a loved one moved further up on the list.

Fry-Revere says incentives are needed, but it’s more about making it financially feasible for a friend or loved one to donate an organ. Pure monetary rewards for donated organs, she argues, could quickly pave the way for the poorest people being exploited.

Few — and only the most needy — would “take the $5,000 for a kidney, and it would get a bad reputation,” Fry-Revere said.

Dr. Sally Satel, psychiatry lecturer at the Yale University School of Medicine, suggested taking financial incentives even further — to go beyond softening the financial ramifications of donation to repay donors through money put into retirement funds, payment for college or the like.

“It is time to test incentives, to reward people who are willing to save the life of a stranger through donation,” she wrote in an commentary accompanying the study. “Altruism is not enough. Pilot trials of incentives are needed.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

As the Supreme Court weighs the fate of a major part of the Affordable Care Act, President Barack Obama Tuesday laid out the moral underpinnings of the law in a speech to the Catholic Health Association.

Noting some of the individuals who make up the millions of Americans who have gained insurance coverage or new protections in the five years since the law was enacted, the president said:  “Behind every single story was a simple question – what kind of country do we want to be?”

Obama’s tone was much more conciliatory than it was the day before, when during a news conference wrapping up the G-7 meeting  in Germany he said of the case now before the Supreme Court, “Frankly, it probably shouldn’t even have been taken up.”

The court is expected to issue a ruling in the case, King v. Burwell, by the end of the month. It challenges the legality of insurance subsidies provided to those in the three-quarters of states that opted not to set up their own insurance marketplace and instead use the one run by the federal government. More than 6 million people could lose those payments and many more residents could see their premiums increase because of the havoc the loss of subsidies would cause in the market.

The president on Monday also reiterated the administration’s assertion that it has no specific contingency plan should the court strike down the subsidies, because it does not think that’s likely to happen and has little discretion to offer relief to consumers. “I think it’s important for us to go ahead and assume that the Supreme Court is going to do what most legal scholars who’ve looked at this would expect them to do,”  Obama said, which is uphold the subsidies.

In the speech to the Catholic Health Association, which was a key ally in passing the health law, Obama did take a swipe or two at those who continue efforts to overturn it.

“There’s something just deeply cynical about the ceaseless, endless, partisan attempts to roll back progress,” he said, alluding to ongoing Republican efforts to repeal and replace the law.

Congressional Republicans have been adamant that they will have a plan if the court strikes down subsidies. But so far they have not agreed on a  single proposal.

On Tuesday, Sen. Bill Cassidy, R-La., introduced another in a long series of GOP alternatives to Obamacare. This one, however, is co-sponsored by Senate Majority Leader Mitch McConnell, R-Ky.,  and Majority Whip John Cornyn, R-Texas. Their “Patient Freedom Act” would allow states to continue to use state insurance exchanges set up under the Affordable Care Act or instead use the funding for subsidies to help people buy insurance to underwrite health savings accounts.

Such bills are unnecessary, the president said, because the current federal health law is working. “This isn’t about myths or rumors that folks try to sustain.  There is a reality that people on the ground, day to day, are experiencing.  Their lives are better.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.