By Mary Johnson
My long time neighbor, Andrew S., was born severely disabled with cerebral palsy. At 41, he's cared for by his mom and family who among other things make sure he takes six pills a day of pricey brand name drug to control seizures. Even though a generic exists, Andrew can't take it without bad reactions and his doctor has ordered no substitutes. The cost of that prescription alone runs $3,456 a year, which was covered by Medicaid — until recently.
Last May, Andrew's mom, Susan, called to say that Andrew, whose only income is his Social Security disability benefit, was found eligible for Medicare Extra Help Part D coverage. And in addition to Medicaid, Andrew would also receive health benefits through the Virginia state Medicaid program. But just two months after his new Medicare Part D coverage started, I received an S.O.S. call from Susan that it was about to end.
She received two letters from his Medicare drug plan— one stating that his expensive brand anti-seizure drug was not on the list of covered drugs, and that the supply he received was temporary. A second letter informed her that Andrew's drug coverage would end effective October 1, 2014.
Starting with the Medicare website's "drug plan finder" at Medicare.gov, I looked into the problem. The website tool allows you to enter the Medicare number of a beneficiary — your own or that of somebody you're helping — and then provides information on the individual's drug plan coverage as currently listed on Medicare's records. There I learned that Andrew's Part D plan would end effective October 1, 2014 and that a new Humana Medicare Advantage plan was listed as his "future coverage." But the listed Humana plan did not cover Andrew's brand name drug, either. Susan didn't receive notification of the change to Humana until almost a week after receiving the cancellation letter from his drug plan.
Andrew is one of 9.6 million low-income Medicare beneficiaries nationwide who also receive Medicaid benefits. Known as "dual eligibles" they are among the sickest and most vulnerable beneficiaries who account for a disproportionate share of spending in both Medicare and Medicaid. Like Andrew, dual eligibles tend to have long-term chronic health problems, and to require higher use of medical services and prescriptions than other program beneficiaries.
At issue for Andrew and Susan is a new pilot Medicare and Medicaid program that utilizes Medicare managed care health plans to provide healthcare benefits for up to 2 million dual eligibles in participating states. Virginia, where Andrew and I live, is one of 12 states participating to date.
Both Medicare and state Medicaid programs are hoping the plans will coordinate care, reduce duplication of services, and save money. But a new report from the Government Accountability Office said that expectations regarding the extent to which integration of benefits will produce savings through lower use of costly Medicare services "may be optimistic." Beneficiary advocates, including TSCL, worry that enrollees have complex medical needs that some managed care plans and providers may not be able to meet. Problems for beneficiaries and their families are more likely to occur when states "automatically enroll" beneficiaries into the program, rather than intelligently selecting plans based on individual needs. Andrew was automatically assigned to the Humana plan, we later learned.
States are testing a variety of different payment models. Virginia is testing a model that will provide a "capitated" or fixed payment for the care of each enrollee. Over the next three years, Virginia Medicare/Medicaid plans will have to come up with a growing portion of savings each year to meet their targets. Will it work? Nobody knows.
Medicare advocates are watching closely. Because of annually increasing savings targets, beneficiaries potentially may be at risk of not getting all of the medically necessary services or prescription drugs that they need.
Beneficiaries retain the right of opting out of the demonstration at any time, and choosing another plan but they must take action to do so. I referred Susan to a State Health Insurance Assistance Program (SHIP) counselor. The counselors provide free, unbiased one-on-one counseling, and in Andrew's case, provided crucial information about how to opt out of the new program. Susan also learned that she could ask Andrew's doctor to request an exemption of Andrew's Part D plan's formulary to receive coverage for the brand name prescription.
With his mom's help, Andrew opted out of the new Humana plan and Susan contacted the state program to make sure Andrew stayed enrolled in his former Medicaid plan. In addition, she contacted Andrew's Medicare Part D plan saying she wanted to keep him enrolled in that plan as well. Finally, she asked Andrew's doctor to contact Andrew's Part D drug plan requesting an exemption to the formulary so that Andrew could get coverage for his Part D brand name drug. Altogether, Susan and Andrew will save an estimated $3,456 over the next 12 months.
It's crucial that families caring for chronically ill or disabled family members get the counseling and help they need to understand their Medicare and Medicaid benefits and make changes when necessary. Every state has SHIP Medicare and Medicaid benefit counselors who provide free, unbiased one-on-one counseling. Many operate through local agencies on aging, or senior services departments. Find a SHIP counselor online here or call the Eldercare Locator at 1-800-677-1116.
Sources: "Disabled Dual-Eligible Beneficiaries, Integration of Medicare and Medicaid Benefits May Not Lead to Expected Medicare Savings," U.S. Government Accountability Office, August 2014.