A total of 16.4 million non-elderly adults have gained health insurance coverage since the Affordable Care Act became law five years ago this month – a “historic” reduction in the number of uninsured, the Department of Health and Human Services said Monday.

Those gaining insurance since 2010 include 2.3 million young adults aged 18 to 26 who were able to remain on their parents’ health insurance plus another 14.1 million adults who obtained coverage through expansions of the Medicaid program, new marketplace coverage and other sources, according to HHS’ report .

Officials say the percentage of people without coverage has dropped by about a third since 2012: from 20.3 percent to 13.2 percent in the first quarter of 2015.

“The Affordable Care Act is working to drive down the number of uninsured and the uninsured rate,” Richard Frank, HHS assistant secretary for planning and evaluation, told reporters. “Nothing since the implementation of Medicare and Medicaid has seen this kind of change.”

Latinos, who traditionally have been least likely to have health coverage, have seen the largest drop in their uninsured rate, according to the report. The Latino uninsured rate fell 12.3 percentage points, from 41.8 percent to 29.5 percent. The uninsured rate for African Americans fell by nearly half, from 22.4 percent to 13.2 percent. The rate for non-Latino whites fell by just over five percentage points.

States that expanded the Medicaid program to 138 percent of the poverty line also saw large reductions in their low-income uninsured populations – an average of 13 percent among people with incomes under the new Medicaid threshold. States that have not expanded the program still saw a decline, though not as large, of about 7 percent.

HHS officials said they expect to have better state-by-state breakdowns and estimates of the number of children covered later this year. The ACA turns five on March 23.

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

SAN FRANCISCO — Rose Gutierrez has a big decision to make.

Gutierrez, who was diagnosed with breast cancer last spring, had surgery and 10 weeks of chemotherapy. But the cancer is still there. Now Dr. Jasmine Wong, a surgeon at UC San Francisco, is explaining the choices – Gutierrez can either have another lumpectomy followed by radiation, or she can get a total mastectomy.

“I think both options are reasonable,” Wong said. “It’s just a matter of how you feel personally about preserving your breast, how you feel about having radiation therapy.”

“I’m kind of scared about that,” said Gutierrez, 52, sitting on an exam table with her daughter on a chair beside her.

“Well if you made it through chemo, radiation is going to be a lot easier,” Wong told Gutierrez, who is from Merced, Calif.

In many hospitals and clinics around the country, oncologists and surgeons simply tell cancer patients what treatments they should have, or at least give them strong recommendations.  But here, under a formal process called “shared decision making,” doctors and patients are working together to make choices about care.

It might seem like common sense:  Each patient has different priorities and preferences; what’s right for one patient may be wrong for another.  Of course patients should weigh in. But many aren’t accustomed to speaking up. Even the most engaged or educated patients may defer to their doctors because they are scared, they don’t want to be seen as difficult or they think the doctor knows best.

For their part, not all doctors want to cede control to patients who have far less medical knowledge or who may be relying on information they got from friends and the Internet. Also, many physicians don’t have the time for long discussions and the health care system isn’t set up to pay for them.

Even so, hospitals and clinics in several other states, including Massachusetts, Minnesota and Washington, have created collaborative programs to ensure that information and concerns flow back and forth between patient and doctor. UCSF’s approach, in particular, has been a model for other programs around the nation.

The concept of shared decision making has been around for years, but it is gaining new traction with the nation’s health law, which specifically encourages its use.

“Patients and families need to be in the driver’s seat with their doctors, making decisions that are the right choice for them for their unique circumstances,” said UCSF associate professor Jeff Belkora, who runs the shared decision-making program also known as the Patient Support Corps.

That way, he said, patients avoid “a rocky, bumpy ride” of either too much or too little treatment.

At UC San Francisco, patients receive DVDs, pamphlets or links approved by the physicians that explain available options for treatment. During appointments, the doctors not only explain carefully the benefits and the risks of those options but also ask about patients’ priorities and goals.

Patients are paired with college students or recent graduates who help them make a list of questions for the doctor beforehand. These young people also record the visit and type notes for the patients, who then leave with a definitive account of what was said.

That’s important because patients are nervous and emotional after a cancer diagnosis and often freeze up, said premed student Edward Wang. Wang said his presence helps put them at ease. “You’re just making a question list and you’re just taking notes,” he said. “But these simple things really do matter to the patient and to the doctor as well.”

Shared decision making has been used for patients with breast and prostate cancer, heart disease, back pain and other conditions for which there are multiple treatment options that offer similar results.

“It’s a massive cultural change,” said Glyn Elwyn, who researches shared decision making at The Dartmouth Institute for Health Policy and Clinical Practice. “It’s going from ‘I’m the expert, take my recommendation’ to ‘I am going to inform you and respect your wishes.’”

Elwyn and other researchers have found that patients are more satisfied with their care when they have a say in it. Also, it may save money. Some research shows that patients who are involved in their treatment decisions are more likely to be conservative, opting against costly procedures or surgeries.

That doesn’t mean the decisions are easy – even for knowledgeable patients.

Ilene Katz, a UCSF nurse who often works with cancer patients, was recently diagnosed with breast cancer and became a patient herself.

At first, she wanted a mastectomy. “My knee jerk reaction, which probably a lot of women have … is there is cancer in my body, cut it out, cut all of it out,” she said.

But on this February day, she came out of the exam room feeling different. A long conversation with the surgeon and the oncologist helped her decide that, for her, there was no real benefit to having a mastectomy over a lumpectomy.

Katz said she was relieved someone was there taking notes so she could go over it later. “I don’t remember everything,” Katz said, her eyes red from crying. “It’s all a black cloud.”

Katz’s doctor, Laura Esserman, said some patients want her to make choices for them. But Esserman, head of the UCSF breast care center, sees herself more as a coach, often asking questions to make sure patients don’t act out of fear or lack of knowledge: What’s the most important thing to you? How do you feel about your body image? What complications are you worried about?

Typically, Esserman said, she tells patients, “I need to know more about your thought process … and how you are going to feel a year from now.”

Candace Walls, 41, appreciates having some control over her care. Diagnosed with cancer six years ago in Stockton, Walls said the doctor recommended a mastectomy and then did the surgery.

“I didn’t have lots to choose from,” Walls said. “It was just kind of like, ‘This is what I think you should do.’”

Since coming to UCSF a year ago, however, she has been very involved with her decisions about breast reconstruction, even asking the doctor to redo part of the surgery when she didn’t like how it turned out. At a February appointment, Dr. Wong answered her questions one by one. “It is a very good feeling to know you can say what you want to your doctor,” Walls said afterward.

That same day, Gutierrez, the patient from Merced, sat nervously in Wong’s exam room as the doctor explained more about her surgery choices.

“With the partial mastectomy we just need to take a little bit more tissue out … and then we would have to do radiation,” Wong said, as a note taker sat typing quickly. “With the [total] mastectomy, you probably wouldn’t need radiation but obviously it’s a bigger operation.”

Gutierrez said that as a single woman in her 50s, she wasn’t too concerned about keeping her breast. But she was worried about how her body would react to radiation.  Most important, she wanted to be sure doctors got rid of the cancer.

“I have 12 grandbabies,” she said. “I want to be here for them.”

Still, Gutierrez told the doctors she was leaning toward the lumpectomy, saying she felt nervous about the pain. “I’m a big sissy,” she said.

“No, you are doing great,” Wong said. She encouraged Gutierrez to take the time she needed to talk over the choices with her family and to call if she needed to talk more. “I don’t want you to feel like you are pressured to make a decision.”

A few days later, Gutierrez decided on a mastectomy, mostly to avoid the radiation and the worry about cancer’s return. She had surgery in early March.

Reached by telephone the next day, Gutierrez said she felt good about her decision – and how she made it with her doctors. “It makes us seem like we are a team,” she said.

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

With a deadline fast approaching, bipartisan negotiations are heating up in the House to find a permanent replacement for Medicare’s physician payment formula. But the tentative package being hammered out behind closed doors contains some key provisions that are likely to raise objections from both Republicans and Democrats.

Unless Congress takes action by the end of this month, doctors who treat Medicare patients will see a 21 percent payment cut.

For doctors, the nail-biter has become a familiar but frustrating rite. Lawmakers invariably defer the cuts prescribed by the 1997 reimbursement formula, which everyone agrees is broken beyond repair. But the deferrals have always been temporary because Congress has not agreed to offsetting cuts to pay for a permanent fix. In 2010, Congress delayed scheduled cuts five times.

The current proposal for a permanent fix may not include full financing for repealing the payment formula, according to congressional aides and industry lobbyists who have been briefed on the talks but spoke on the condition of not being named because of the sensitivity of the discussions. That provision could run into concerns from many Republicans and some Democrats. 

In addition, Senate Democrats are leery of another provision reportedly part of the negotiations – charging wealthier Medicare beneficiaries more for their coverage, according to top Senate aides who briefed reporters Sunday. They also noted that although Democrats are eager to attach to a deal an unrelated measure to extend the Children’s Health Insurance Program, they would like it to cover four years, not the two years that the House is reportedly considering.

Still, they said, with some changes in the package, Senate Democrats might be able to support the developing House package.

“Our members would like to get there,” one of the aides said.

Here are some answers to frequently asked questions about the congressional ritual known as the doc fix. 

Q: How did this become an issue?

Today’s problem is a result of efforts years ago to control federal spending – a 1997 deficit reduction law that called for setting Medicare physician payment rates through a formula based on economic growth, known as the “sustainable growth rate” (SGR). For the first few years, Medicare expenditures did not exceed the target and doctors received modest pay increases. But in 2002, doctors were furious when they came in for a 4.8 percent pay cut. Every year since, Congress has staved off the scheduled cuts. But each deferral just increased the size of the fix needed the next time.

The Medicare Payment Advisory Commission (MedPAC), which advises Congress, says the SGR is “fundamentally flawed” and has called for its repeal. The SGR provides “no incentive for providers to restrain volume,” the agency said.

Q. Why don’t lawmakers simply eliminate the formula?

Money is the biggest problem. An earlier bipartisan, bicameral SGR overhaul plan produced jointly by three key congressional committees would cost $175 billion over the next decade, according to the Congressional Budget Office. While that’s far less than previous estimates for an SGR repeal, it is difficult to find consensus on how to finance a fix.

For physicians, the prospect of facing big payment cuts is a source of mounting frustration. Some say the uncertainty has led them to quit the program, while others are threatening to do so. Still, defections have not been significant to date, according to MedPAC.

In a March 2014 report, the panel stated that beneficiaries’ access to physician services is “stable and similar to (or better than) access among privately insured individuals ages 50 to 64.” Those findings could change, however, if the full force of SGR cuts were ever implemented.

Q: What are the options that Congress is looking at?

A: The bipartisan negotiations among key House leadership and staff from committees with jurisdiction over the SGR have been behind closed doors, and the offices of both House Speaker John Boehner, D-Ohio, and House Minority Leader Nancy Pelosi, D-Calif., declined to comment on the negotiations. But some details are emerging.

Late Friday, the bipartisan leadership of the House Ways and Means and Energy and Commerce committees – the two House panels with jurisdiction over the SGR – said in a statement that “we are now engaging in active discussions on a bipartisan basis – following up on the work done by leadership – to try to achieve an effective permanent resolution to the SGR problem, strengthen Medicare for our seniors, and extend the popular Children’s Health Insurance Program.”

Last year’s proposal from the House Energy and Commerce and Ways and Means committees and the Senate Finance Committee is reportedly the basis of the current SGR talks, according to the lobbyists and aides, in part because it enjoyed bipartisan support and would encourage better care coordination and chronic care management, ideas that experts have said are needed in the Medicare program.

That proposal would have scrapped the SGR and given doctors an 0.5 percent bump for each of the next five years as Medicare transitions to a payment system designed to reward physicians based on the quality of care provided, rather than the quantity of procedures performed, as the current payment formula does.

Tacking on a package of other health measures – known as extenders – that Congress renews each year during the SGR debate would push the cost even higher. They include additional funding for therapy services, ambulance services and rural hospitals, as well as continuing a program that allows low-income people to keep their Medicaid coverage as they transition into employment and earn more money.

As part of the proposal, the House members are also talking about adding two years of funding for the Children’s Health Insurance Program, a federal-state program that provides insurance for low-income children whose families earned too much money to qualify for Medicaid, according to the lobbyists. While the health law continues CHIP authorization through 2019, funding for the program has not been extended beyond the end of September.

The length of the extension could cause strains with Senate Democrats. Last month, the Senate Democratic caucus signed on to legislation from Sen. Sherrod Brown, D-Ohio, calling for a four-year extension of the current CHIP program, according to senior Senate Democratic aides. Democrats want that CHIP language in the SGR deal because “this may be the only health care vehicle moving,” said one of the Senate aides. 

Just two years of additional CHIP funding is non-starter for Democrats. “We need to make sure that Children’s Health Insurance Program is on a sustainable path,” the aide said.

Q: How would Congress pay for all of that?

A: It might not. That would be a major departure from the GOP’s mantra that all legislation must be financed. Tired of the yearly SGR battle, veteran members in both chambers may be willing to repeal the SGR on the basis that it’s a budget gimmick – the cuts are never made – and therefore financing is unnecessary.

But that strategy could run into stiff opposition from Republican lawmakers and some Democrats. Most lawmakers are expected to feel the need to find financing for the Medicare extenders, the CHIP extension and any increase in physician payments over the current pay schedule. Those items would account for about $60 billion of financing in an approximately $200 billion package.

Conservative groups are urging Republicans to fully pay for any SGR repeal.

“Americans didn’t hand Republicans a historic House majority to engage in more deficit spending and budget gimmickry,” Dan Holler, communications director for Heritage Action for America, said in a statement. “Any deal that offsets a fraction of the cost, like the one currently being discussed behind closed doors and leaked to the press, is a non-starter for conservatives.”

But physicians and other analysts make the point that Congress has already paid out billions on temporary patches that don’t fix the problem.

“Congress has spent a staggering $170 billion on 17 patches in a 12-year period, the cost of which has far exceeded the cost of eliminating the SGR altogether,” American Medical Association President Robert M. Wah wrote last month. “This continuous cycle of putting a Band-Aid on the real problem, creates an unpredictable environment that makes it difficult for physicians to budget and plan for practice innovations that could improve quality and reduce costs.”

Q. Will seniors and Medicare providers have to help pay for the plan?

According to the lobbyists and aides, the potential financing options being looked at by House negotiators include charging wealthier Medicare beneficiaries – who already pay a higher premium – even more and introducing a surcharge on the popular “first-dollar” supplemental Medicare insurance known as “Medigap.” Experts contend that the “first-dollar” plans, which cover nearly all deductibles and co-payments, keep beneficiaries from being judicious when making medical decisions. The change could convince them to reduce opt against treatment they don’t need, thus saving Medicare money. President Barack Obama’s fiscal 2016 budget plan includes similar provisions.

Congress could also extend the automatic 2 percent Medicare cuts in place as part of budget sequestration, but those cuts would face stiff opposition from Medicare providers and the groups they serve.

Senate aides said Democrats there are likely to take issue with the provisions to reduce reimbursements to Medicare providers and to require seniors to pay more.

Medicare beneficiaries already pay 25 percent of all Part B costs (physician services are included in Medicare Part B), so an increase in Medicare reimbursements to physicians would increase what seniors in the traditional Medicare program pay for premiums, deductibles and co-insurance, according to an analysis from the Kaiser Family Foundation. According to the report, half of all people on Medicare live on incomes of about $23,500 or less, and seniors spend three times more than younger households on health care as a share of their household budgets. (KHN is an editorially independent program of the foundation.)

Asking seniors to pay more for their Medicare in exchange for higher Medicare payments to physicians “doesn’t seem like a very fair thing to do for seniors,” a senior Senate Democratic aide said.  Using payment cuts to other Medicare providers, like hospitals, may be problematic as well because such steps “always sort of generate opposition and heartburn for both sides of the aisle,” the aide said.

Q. How quickly could Congress act?

Legislation to repeal the SGR could move in the House as early as the week of March 16, the lobbyists said.

The Senate Democratic aides said that they expected Democrats and Republicans in that chamber will want to offer amendments to the emerging House package, making it extremely difficult to pass any overhaul before the Senate’s two-week break scheduled to begin starting March 30.

If the SGR issue can’t be resolved by March 31, expect Congress to pass a temporary patch as negotiations continue.

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