Arthritis Resources: Advocacy

Have you ever been an advocate? Before you answer “no,” you may be surprised to learn that advocacy is more common than you think. If you have helped another person get something he or she needed, championed a cause on behalf of a wider community, or even pleaded your own case to an insurance company, you have experience being an advocate.

Because May is National Arthritis Month, when many programs and events are scheduled throughout the United States to increase awareness of arthritis, it’s a perfect time to start thinking about arthritis advocacy. You may not think you have what it takes to be an advocate. Maybe you don’t feel well much of the time, or you are busy enough just making it through the day. But you should realize that advocates have an opportunity to make a big difference by advocating for political or personal causes.

Political advocacy

Political advocacy involves petitioning lawmakers and other officials at the national, state, or local level.

The national level. People with arthritis have benefited a great deal from advocating their cause with the federal government. Examples of federal laws that have had the support of committed arthritis advocates include the amendments to the Social Security Act that created the Social Security Disability Insurance (SSDI) program and the Americans with Disabilities Act (ADA).

Both the SSDI program and the ADA have had profound effects. SSDI provides income to people unable to work because of serious health issues. Two years after qualifying for SSDI, people of any age can also qualify to receive coverage under Medicare, the government health insurance program that typically covers people 65 and older. The ADA prohibits discrimination against people with a disability in certain circumstances, including on the job.

Without national attention to the needs and problems of people with disabilities, changes like these might never have happened. An advocate’s contact with the national legislators who represent his or her state and district can play a big role in initiating or supporting important legislation. There are many ways to contact your national legislator, including personal visits, phone calls, and letters sent by e-mail, fax, or postal mail. No matter what tactic you use, it is essential that legislators know that many people have a particular need and that there are workable ways to meet the need.

The state level. Lobbying your state legislators can be as important as lobbying national legislators. The process is similar. As with national legislators, e-mails, faxes, and phone calls can be effective. Visits may be easier on the state level because you may not need to travel as far.

Sometimes, an initiative that begins on a state level catches the attention of national representatives. For example, a few states have laws that guarantee all residents access to individual health insurance, at normal rates, regardless of pre-existing conditions such as arthritis. (At the moment, these states include Massachusetts, New Jersey, and New York.) In part because of states’ actions, the federal health-care reform legislation passed this March will eventually require insurance companies to cover pre-existing conditions.

The local level. Sometimes the most effective advocacy is done at the local level. Local changes may seem small, but they can make a big difference. For example, you might advocate for the addition of handicapped parking spaces or barrier-free curbs or ramps in front of businesses and municipal buildings in your town. As a result of local efforts, statewide regulations for barrier-free access are now in place in many states. In addition, it’s often easier to set up a face-to-face meeting with a local decision-maker than with a state or national legislator. A visit to a town manager, appointed official, or mayor can yield fast results — sometimes a problem that seems overwhelming has a relatively simple solution. (If you’re not sure whom to talk to, start with the town clerk.)

Remember that if you are having a problem or see a need, it’s likely that someone else is having the same problem as well. Taking another person with you on your visit can help make the case that the problem affects others.

Personal advocacy

Political advocacy is not the only type of advocacy. Sometimes you have to advocate for yourself.

Your role. Talking with your boss about your arthritis and your need for appropriate accommodations at work is one example of personal advocacy. Another might be talking with your family about what chores you can and cannot do, how long you can walk in a mall, or what help you need with a special project. It is sometimes difficult to ask for help, but your friends and family will appreciate an honest assessment of your needs and abilities. If your family cannot understand the difficulties you face, perhaps a friend or health-care professional can be your advocate and get the message across.

You and your family can also advocate with your doctor or other health-care professionals if you believe you need additional assistance or changes to your treatment. By making sure, in a polite but firm way, that you get your needs met by your doctor, you are performing what may be the most important and most common type of advocacy.

Your doctor’s role. Although advocating for yourself at the doctor’s office is essential, keep in mind that your doctor can also be your advocate. Doctors can compile and communicate information to help you qualify for SSDI benefits. If you are in the middle of a divorce and trying to reach an appropriate settlement, your doctor can help gather information on your health problem. Your doctor can also fill out forms for short-term or long-term disability insurance and can perform physical exams to justify sick days taken because of arthritis-related illness or surgery. He or she may even talk to your family to help them better understand your health problem. In addition, your doctor may be your advocate with other doctors and serve as a team leader for your care. On occasion, doctors can help testify on your behalf in legal cases. And doctors can help advocate for you with pharmaceutical companies if you cannot afford necessary medicines, or with insurance companies to convince them that a treatment is medically necessary and should be covered.

A lawyer’s role. For most people with arthritis, the advocacy of a lawyer is usually related to obtaining SSDI benefits or protecting legal rights under the ADA. Occasionally, legal advocacy is necessary for malpractice issues. To find a lawyer to be your advocate, it’s often best to ask friends for recommendations. The phone book will have a list of lawyers and their specialties. In addition, the American Bar Association, states, and counties have organized legal aid societies that will perform pro bono (free) legal services.

Helpful organizations

The following organizations and Web sites can help you participate in arthritis advocacy of all kinds.

American Bar Association

(800) 285-2221

The American Bar Association Web site can help you find lawyers in many specialties. Click on “Public Resources” and look for “Find Legal Help” for information on lawyers in your area, including those who provide free legal help.

American Medical Association

The American Medical Association’s Patients’ Action Network provides updates on federal and state health-care issues in Congress. Click on “Issues” to read about important legislation or on “Legislator Search” to identify your representatives and see how they voted on key issues. To read a helpful pamphlet on successfully communicating with members of Congress, click on “Advocate Resources.”

Arthritis Foundation

(800) 283-7800

The Arthritis Foundation (AF) is very active in advocating for people with arthritis on a national level. Visit the Web site above and click on “Advocacy Priorities” in the left-hand column. There you will find a discussion of the issues the AF is focusing on, including health-care reform, the Arthritis Prevention, Control, and Cure Act, and increased funding for arthritis research. The AF also advocates more generally to educate legislators and the public about all the different types of arthritis and how they affect health and quality of life.

You can help the AF further these goals by becoming an “Arthritis Advocate.” From the Web address above, click on “Become an Advocate” to sign up and learn how to contact your state and federal representatives. A sample letter and many helpful tips are included. You will also find the brochure “Guide to Volunteer Advocacy,” which clearly sets out the dos and don’ts of successful advocacy. In addition, the Web site provides contact information for your legislators and makes it easy to send them e-mails.

Every year, the AF organizes the Advocacy and Kids’ Summit, which enlists a group of volunteers (including children) and trains them to give their testimony on Capitol Hill. Information on this summit and any other of the AF’s advocacy efforts is available by calling the phone number above. The operators at this phone number can also direct you to your local AF chapter, where you can learn about local advocacy opportunities.

Fibromyalgia Network

(800) 853-2929

The Fibromyalgia Network’s Web site provides information on fibromyalgia as well as some resources on fibromyalgia advocacy. From the main Web page, click “Resources” and then “Advocacy.”

Lupus Foundation Of America

(202) 349-1155

Information on lupus advocacy can be found on the Web site of the Lupus Foundation of America. At the top of the main page of the Web site, click on “Get Involved” and then “Advocacy & Legislation.” There, you’ll find information on the advocacy priorities of the Lupus Foundation. In addition to following the health-care reform debate, the Lupus Foundation is focusing its efforts on a federal bill called the Affordable Access to Prescription Medications Act. The Advocacy & Legislation page also gives you an opportunity to become an “e-Advocate” and inform legislators about the needs of people with lupus.

As with the Arthritis Foundation, much of the Lupus Foundation’s local advocacy is carried out by the local chapters. Visit the Lupus Foundation Web site, call the number above, or consult your phone book to find contact information for your local office.

Scleroderma Foundation

(800) 722-4673

On the Web site of the Scleroderma Foundation, click on “Advocacy” to learn how to contact representatives about issues and legislation important to people with scleroderma.

Wendy McBrair spent 30 years as a health-care professional in the fields of rheumatology and orthopedics, where she specialized in patient and community service, patient education, and advocacy.

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