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Update: Campaign to End Discrimination

It can't be done without you

by Rona Purdy, campaign chair, and Mike Malloy, campaign projects director

The opportunity to effect change in the acceptance of brain disorders as physical illnesses has never been better. Although we did not get passage of the Domenici-Wellstone amendment in the final version of the Kennedy-Kassebaum Health Care Reform Act, we did move the "needle" considerably in the minds of decision-makers.

The issue became one of blatant discrimination. Policy makers can no longer continue to ignore us in the private healthcare system and treat us as second-class citizens in the public Medicaid system without risking being labeled discriminators.

Make brain disorders as acceptable as heart disease, cancer, and epilepsy.

In the year ahead, there is opportunity to move our agenda in both private and public health care. You MUST play a key role.

NAMI's Campaign to End Discrimination plan for year two will require major efforts in the grassroots. The opportunity to change the way brain disorders are discriminated against in both public and private health care will continue to be the major focus of the campaign. Many states will introduce state parity bills. We will all be paying close attention to the Medicaid changes during the November election.

To end discrimination we must work together to create a groundswell of public support for our issues. We will not be truly successful until the public views severe brain disorders with the same compassion and knowledge as it views heart disease, cancer, epilepsy, and other physical disorders.

The building of an army to end discrimination requires people. Every attempt must be made to enlist more supporters. The number of people we say we represent matters. Our current membership number is not yet large enough if we are to truly have an impact.

Here are four things YOU can do now to increase our numbers:

  1. Sign up your entire family in NAMI and your state organization. Sign up your adult children, your brothers, sisters, grandparents, aunts, and uncles. This is the easy part. Our issue is a family issue. Ending the stigma begins at home.

  2. Next, sign up your friends and neighbors. And ask your family members--the ones you just signed up--to do the same thing. None of these people must have a brain disorder in their family--or must want to attend a support group--to join us. All anyone has to do is be is a supporter of our mission. These people probably already know that you or someone you love has a brain disorder. By approaching them you are reinforcing your level of comfort with discussing brain disorders. You are teaching them to look beyond the stigma and to accept and support brain disorders in the same way they would support heart disease, cancer, or Alzheimer's disease.

    Many state organizations have dues for this type of membership. We recommend that $25 be sent to NAMI, then NAMI will return $7 and the new member's name to the state organization.

  3. Then turn to your doctor, dentist, lawyer, accountant, and associates at work. All of these people probably know that someone you love has a brain disorder. Sign them up as members of your state organization and NAMI.

  4. Reach out to the influential people in your community. There are individuals and organizations in every community that care about people. These are the community activists, religious- community members and organizations, and members of local civic groups. These people shape community opinions and attitudes--and too few understand brain disorders. Campaign brochures and materials are available to you through your state campaign coordinator. But "leafleting the world" at health fairs will have minimal impact on discrimination. On the other hand, distributing campaign materials and discussing brain disorders one-to-one with your community's opinion leaders will make a difference. Presenting the science message as a program at one of their meetings is a good way to engage these groups--but sign them up as members.

Here are three things YOU can do now to educate your community's opinion leaders:

  1. Become part of the campaign in your state and community. All 50 states--and many communities--have appointed campaign coordinators. Call your state office to get in touch with your coordinator.

  2. Work with your campaign coordinators to reach influential opinion leaders in your community. Ask to speak at their meetings. Use the campaign materials to present the reasons our brain disorders should be covered the same way as other brain disorders such as Parkinson's, Alzheimer's, or epilepsy. A key message to deliver is that society pays and will continue to pay for these disorders one way or another, either by their taxes in Medicaid and Medicare payments or by giving us equal protection in private insurance. Take along an open letter to your U.S. senators and representatives, your state senator and representatives, your governor, and the president. Ask community leaders to sign them and include their affiliation. Ask them to join us in our efforts to end this unfair discrimination--and to join as an associate member of NAMI and your state organization. Signed letters with lots of signatures should then be copied and sent to all of the parties addressed and to NAMI's Campaign to End Discrimination.

  3. Adopt a legislator. Target a key legislator for whom you voted and take on the ongoing job of making him or her a "friend and ally." Join NAMI for this legislator, as a gift for him or her. Send this "friend and ally" frequent notes and information.

  4. Identify business leaders in your community. Our loudest opponent in our efforts to end insurance discrimination for brain disorders has been the business community. Business interests widely criticized our attempts to end insurance discrimination as being a broad mandate that would lead to skyrocketing costs. The truth of the matter is that coverage of the severe brain disorders is not a broad mental health mandate and that numerous studies have shown that the cost of ending discrimination is minimal. By identifying local business leaders now, you will be prepared to effectively use campaign materials with business groups. These materials will be distributed to state campaign coordinators and state organizations in the coming months.

Tell us what you've accomplished and receive a campaign lapel pin.

When you've signed up your family, friends, neighbors, co- workers, senators, representatives, and business acquaintances, write to us at the campaign and tell us what you have done. When you have contacted your state and local campaign coordinator and worked to reach community opinion leaders, write to us. Again, tell us what you have done. We will send you a limited-edition campaign lapel pin. Most important, though, you will have joined the Campaign to End Discrimination as a participant.

Please write to: NAMI Campaign to End Discrimination Attention: Sarah Johnson Colonial Place Three 2107 Wilson Blvd., Suite 300 Arlington, VA 22201-3042 

The campaign is made possible by the Campaign To End Discrimination founding sponsors: Abbott Laboratories; Bristol-Myers Squibb Company; Eli Lilly and Company; Janssen Pharmaceutica, Inc.; Pfizer, Inc.; Sandoz Pharmaceuticals; SmithKline Beecham; and Wyeth-Ayerst Laboratories. In accordance with NAMI policy, acceptance of funds does not imply endorsement of any business practice or product.