01/29/2014 01:02 pm ET Updated Mar 31, 2014

Heard on the Helpline: Caller Trends Reveal Needed Improvements to Medicare

Disclaimer: All names and identifying details have been changed to protect the privacy of individuals.

This year is already looking to be a big one for Medicare. Congress is nearing an agreement on how to fix the flawed formula that determines physician reimbursement, the Administration recently proposed sweeping changes to rules governing Medicare Part D protected drug classes, and the nation nears another election cycle. As with past elections, Medicare could emerge as a persistent, perhaps even controversial, theme.

As policymakers, the media, and the public engage with these issues, it is critical that the voices, the stories, and the lived experiences of people with Medicare inform these debates. The challenges faced by retirees and people with disabilities must not be ignored.

These challenges are made abundantly clear through an analysis of calls made to the Medicare Rights Center's national helpline. In 2012, the helpline answered more than 14,000 Medicare-related questions posed by beneficiaries and the people who help them -- family caregivers, social workers, physicians, and others. The most common questions heard on the helpline centered on three themes: affording basic health care costs, appealing denials of coverage, and enrolling in Medicare. In all of these areas, we see that Medicare beneficiaries lack needed support.

"We can't afford my husband's hospital bills. Can you help us?"

Half of all people with Medicare -- 25 million older adults and people with disabilities -- live on annual incomes of $23,500 or less, and one quarter live on $14,400 or less. Further, the average Medicare household spends 14% of their income on health care, nearly three times more than non-Medicare households. So it is not surprising that many people call the helpline seeking assistance with health care costs.

Fortunately, federal and state low-income assistance programs are available. The Medicare Savings Programs help cover premiums and other cost sharing, and Extra Help reduces prescription drug costs.

One person whose problem is described in the report is Ms. O. She has a monthly income just over $961 per month and faced eviction because she was paying for her Medicare premiums and copayments instead of her rent. Ms. O's social worker called the helpline to inquire about Medicare subsidy programs for her client.

Regrettably, these programs are undersubscribed. Ms. T called the helpline about appealing her plan's refusal to pay for an x-ray ordered by her physician. In the course of the session, the Medicare Rights counselor determined that based on her income, Ms. T appeared to qualify for Extra Help, and proceeded to screen her for benefits that Ms. T was previously unaware of.

But not all of our callers who struggle with medical costs are eligible for this assistance. We also hear from people like Mrs. R, who called because the bills for her husband's recent hospital stay were piling up. A one-day outpatient visit cost $300, a staph infection contracted in the hospital necessitated a return trip -- and a $700 copayment -- and an apparatus to treat the infection cost $500. Mr. and Mrs. R's annual income was too high to qualify for help, and yet too low to afford these costs. Mr. and Mrs. R's plight is all too common.

"My Medicare Advantage plan denied the prosthesis for my amputated foot. What can I do?"

We also find that many callers do not know where to turn when coverage for a health care service or prescription medicine is denied. Mr. S has diabetes and developed a serious foot infection requiring amputation of his lower leg. He called the helpline because his Medicare Advantage plan denied prior authorization to fit him for a prosthesis.

Like Mr. S, many callers are unaware of their right to appeal a plan denial. Mr. N left his mother's prescription at the pharmacy when he was told that the copayments amounted to over $400. Unable to afford this expense, he called Medicare Rights' helpline. A counselor was able to describe the multi-step appeals process and assist Mr. N in making several phone calls, writing multiple letters, and enlisting the support of his mother's physician.

With a helpline advocate by their side, Mr. S and Mr. N were able to exercise their right to appeal. Yet our experience suggests that many people go without needed medical care due to erroneous denials.

"My sister told me that I have to enroll in Medicare. I have no idea where to start."

With some 10,000 individuals becoming eligible for Medicare each day, it is not surprising that many of the people who call Medicare Rights' helpline are newly eligible to Medicare. Some are approaching retirement, and others expect to remain at work past their 65th birthday. These callers tend not to know how to transition to Medicare, and their issues are diverse and complex. Even callers like Ms. S, a retired professional who worked in the pharmaceutical industry, are sometimes confused by the enrollment process.

Like Ms. S, many of our callers have a difficult time obtaining clear and accurate information. Mr. K, for instance, retained insurance from his employer that generously continued unchanged for a year into his retirement. When the year was almost over, he contacted the Social Security Administration to enroll into Medicare Part B and received some troubling news: having missed his special enrollment period, Mr. K could not obtain Medicare coverage for doctor's services until the following July.

Far too often our clients reach the helpline when it is already too late. Easy-to-make mistakes result in severe consequences, including premium penalties and gaps in coverage. And these consequences take a toll not only on beneficiaries themselves but on entire families.

Complacency is Not an Option.

Medicare is a federal promise to the American people, offering critical support to 50 million Americans -- and growing. While a dialogue about Medicare's sustainability is vitally important, it must not come at the expense of those who rely on the program. The analysis of Medicare Rights' helpline also provides policy recommendations to address these areas where beneficiaries lack needed support. Critically, federal policymakers must expand the conversation about Medicare, moving beyond a narrative concentrated almost exclusively on federal Medicare spending and addressing the real problem of rising health care costs as a whole.

Toward that end, Congress and the administration must continue to pilot programs to better coordinate care while embracing opportunities to streamline and improve the delivery of Medicare benefits for those who need and use this critical health coverage. In this arena, opportunities abound, ranging from implementing simplified appeals processes, expanding and automating enrollment for low-income programs, and improving communications for people transitioning into Medicare. As evidenced by a year's worth of questions to the Medicare Rights Center's helpline, much can be accomplished to better support Medicare beneficiaries and their families.