National Alliance on Mental Illness
page printed from
(800) 950-NAMI;

Presidential Debate Ignores Medicare Beneficiaries Who Need Prescription Drug Benefit The Most: Non-Elderly Disabled Beneficiaries, Including People With Psychiatric Disabilities

The Interests of Non-Elderly SSDI Beneficiaries Must Be Part of This Debate

For Immediate Release, October 4, 2000
Contact: Chris Marshall

Last night's Presidential debate between the Democratic presidential candidate Vice President Al Gore and Republican candidate George W. Bush started with a flourish on the issue of a prescription drug benefit for Medicare beneficiaries. Unfortunately, as both party candidates sought to clarify their position, they completely ignored the substantially large group of citizens who need coverage for prescription drugs the most - non-elderly people with disabilities who receive Medicare.

NAMI recognizes that both Vice President Gore and Governor Bush are hoping to get the attention of seniors in battleground states as election day nears, however Medicare prescription drug coverage is not only about "coverage for seniors." While this characterization of the issue may offer political simplicity, NAMI believes that it excludes the population of Social Security recipients who are most in need of prescription drug coverage - non-elderly people with disabilities who are SSDI beneficiaries. Furthermore, NAMI has consistently argued that it is non-elderly SSDI beneficiaries with severe mental illnesses who most need outpatient drug coverage. While some SSDI beneficiaries may need only coverage for acute care to achieve recovery and work, individuals with severe mental illnesses simply must have coverage for medications in order to even consider employment as an option.

Currently, there are 1.3 million non-elderly disabled Americans on SSDI. Of this population, nearly 400,000 became eligible through a "mental disorder" under Social Security's medically determinable eligibility standards. While this figure is not nearly the size of the number of our nation's growing elderly population, it does represent an important population in the Medicare debate. First, people with severe mental illnesses come on to the cash benefit rolls earlier than any other disability category. The typical onset of an illness such as schizophrenia is late adolescence or early adulthood. Young adults with the most severe, disabling symptoms are likely to qualify for benefits within a year or so. Many depend on benefits for a large part of their adult life. By contrast, individuals who use SSDI as an early retirement program for injuries or chronic disabilities related to lifetime of manual labor stay on cash benefits for a brief period before moving into Social Security's main retirement program. Thus, the long-term fiscal implications of SSDI beneficiaries with severe mental illness go beyond their numbers.

Second, the lack of an outpatient prescription drug benefit in Medicare has important consequences for state Medicaid programs. Under the current system, many SSDI beneficiaries with severe mental illnesses are forced to spend down their assets and go into poverty to establish eligibility for Medicaid to get drug coverage. Once on Medicaid, these individuals must stay poor to keep their Medicaid coverage. Persons who are dual eligible for SSI and SSDI face similar concerns, as do so-called "disabled adult children," who must move onto SSDI when their parents retire. This system also prevents many families from providing even the most modest forms of financial assistance to their sons, daughters and siblings with severe disabilities, out of fear of jeopardizing Medicaid eligibility. The TWWIIA will be a tremendous help to many consumers and families in this arena, but more needs to be done to ensure that people do not have to become poor, and stay poor for their entire adult life, just to access prescription drug coverage.


All NAMI members and advocates are encouraged to contact the campaigns of Vice President Al Gore and Texas Governor George Bush and let them know that a Medicare prescription drug benefit is important for beneficiaries with disabilities, including psychiatric disabilities, not just seniors. NAMI members need to make their voices heard to keep the candidates from ignoring people with severe mental illnesses in this debate. Please send your comments via the comment lines on the Candidates' campaign websites at and

Also make your comments to the Democratic and Republican National Committees.

Democratic National Committee
430 S. Capitol St. SE
Washington, DC 20003
Phone: 202-863-8000

Republican National Committee
310 First Street, SE
Washington, DC 20003
Phone: 202.863.8500
Fax: 202.863.8820


What Does NAMI Want to See in a Medicare Outpatient Prescription Drug Benefit?

1. Congress should ensure that any prescription drug program offered as part of, or as a supplement to, Medicare be made available to non-elderly SSDI beneficiaries under the same terms and conditions as those for seniors. Although election-year politics may make it tempting to focus on the nation's growing elderly population, we are adamantly opposed to any program that would discriminate against non-elderly people with disabilities who are eligible for Title II benefits by establishing a program that either limits their eligibility or establishes terms or conditions that do not apply to seniors. Managed care plans such as Medicare Plus Choice and "prescription drug only" plans should be required to offer enrollment to non-elderly SSDI beneficiaries under the same rules and conditions as those for seniors.

2. Prescription drug coverage under Medicare should accompanied by the enactment of parity for mental illness benefits. Currently, the Medicare co-payment for Part B outpatient services is 20 percent. This co-payment does not apply to mental illness treatment, however, which is only covered at a rate of 50 percent. There is also currently a 190-day lifetime limit for inpatient psychiatric hospital treatment. Furthermore, only office-based therapy and partial-hospitalization mental health services are allowed under Medicare's current coverage-no assertive community treatment or psychiatric rehabilitation is covered. NAMI urges that Congress use this historic opportunity to address a prescription drug benefit to also address the discrimination in Medicare's existing mental illness benefits. Neither the proposals put forward by the Bipartisan Commission on the Future of Medicare nor the Clinton Administration addresses this basic unfairness within Medicare.

3. To the maximum extent possible, NAMI believes that a Medicare outpatient prescription drug benefit should be a national program benefit that is standardized throughout the country. The depth and scope of coverage for medications should not be dependent on where you live. While NAMI is not opposed to a state role in any program, there should be national standards that ensure reasonable similarities in coverage across the nation.

4. Coverage should be adequate to finance the most expensive drugs for the treatment of serious and persistent mental illness. NAMI is concerned that the President's Medicare prescription drug proposal, as well as several competing plans in Congress, has a principal objective of providing a tangible benefit to a large number of people, rather than helping a small number of Medicare beneficiaries with high drug expenses. For example, in the President's plan there is no limit on how much an individual would have to pay out-of-pocket for medications. Likewise, the benefit would begin immediately, regardless of an individual's expenses. While such limitations may serve to keep premiums low so that large numbers of healthy Medicare beneficiaries will sign up for a voluntary program, these restrictions are likely to impose significant burdens on people with chronic and severe illnesses who rely on medications as their principal form of treatment. An examination of the costs of several key psychiatric medications indicates that, while many Medicare beneficiaries might be helped in meeting the high costs associated with their drugs, substantial gaps in coverage would likely persist under proposals such as the President's. Average annual costs for major psychiatric medications include: Clozaril ($6,200), Paxil ($711), Prozac ($808), Risperidone ($2,800), zoloft ($852), and Zyprexa ($3,000). It is important to note that most people living with severe mental illnesses such as schizophrenia and bipolar disorder are prescribed several medications (including drugs to treat side effects) rather than a single drug.

5. Medicare prescription drug formulary policies should not interfere with access to the newest and most effective medications for serious brain disorders such as schizophrenia and bipolar disorder. Medications for mental illnesses differ from one another - either in their effectiveness in treating specific symptoms or disorders, or in their side effects. There is solid evidence that newer medications offer advantages over conventional medications in either effectiveness or side effects. For example, most treatment guidelines now recommend newer antipsychotic medications as the drugs of first choice because they can be more effective in treating symptoms in some individuals and because their side effects may cause fewer short-term and long-term problems - and in particular, fewer cases of tardive dyskinesia, an irreversible and potentially disabling movement disorder.

However, some health plans (including many that now are a part of Medicare through the Medicare Plus Choice program) place restrictions on access to medications. Sometimes these policies may be appropriate to avoid the inappropriate use of drugs or to encourage the use of generic equivalents. But often the limitations are designed primarily to discourage the use of more expensive medications. Limitations may take the form of a restricted formulary, in which only certain medications are covered by the plan, or a "fail-first" policy, requiring failed treatment with older, less expensive medications before allowing treatment with newer medications. NAMI supports efforts to ensure that Medicare (and all health plans participating in the program such as Medicare Plus Choice) offer access to all effective and medically appropriate medications. If Medicare (or a participating health plan) uses a formulary, exceptions from the formulary limitation must be allowed when a non-formulary alternative is medically indicated. Moreover, procedures should be established whereby beneficiaries can appeal a decision to prescribe a specific medication. Finally, Medicare (and participating plans) should not be allowed to require beneficiaries to switch from medications that have been effective for them.

For more information on this issue and other Medicare issues, please go to the NAMI Where We Stand papers on the policy page of the NAMI Website