Becoming An Arthritis Advocate

What does it mean to be an arthritis advocate, or an advocate in general? According to the dictionary definition, an advocate is a person who argues for or supports a cause or policy; or a person who works for a cause or group. Advocacy comes in many different forms, and the arthritis cause is full of opportunities to engage in a variety of advocacy work. You can be an Arthritis Foundation e-Advocate or Ambassador, a fundraiser, a public speaker, a blogger, a tweeter, a public policy lobbyist, or a social media activist, or you can work in several other areas to help support those who live with arthritis.

If you’re passionate about the arthritis cause and you want to get involved, there are a lot of options out there for people of all levels of ability and experience. Whether working with a bigger organization, such as the national Arthritis Foundation, or getting involved with advocacy on a smaller scale, like starting a Facebook page or your own blog, there’s one thing that arthritis advocates agree on: Just do something!

“Don’t be afraid to get involved,” says Laurie Markle, Grassroots Advocacy Manager for the Arthritis Foundation in Washington, DC. “People are often afraid of advocacy because they don’t want to debate politics and feel unprepared to discuss policy. But as an arthritis patient or caretaker, you know more than you think you do. Your story is your most powerful tool and you shouldn’t be afraid to use it.”

Markle has been working as a national manager for the Arthritis Foundation for the last four years, helping to establish and engage a grassroots advocacy network of 68,000 people. She operates the Arthritis Ambassador Program, which uses volunteers to mobilize and effect change on Capitol Hill.

The arthritis cause

Arthritis is a serious health issue and is the leading cause of disability in the United States, according to the Centers for Disease Control and Prevention (CDC). A complex family of musculoskeletal disorders consisting of more than 100 different diseases or conditions, arthritis can affect people of all ages and genders. There are 50 million adult Americans who have a doctor-diagnosed form of the disease (1 in 5 adults). And an estimated 300,000 American children under age 18 have some form of arthritis. According to the Arthritis Foundation, within 20 years the number of people with arthritis will soar. By 2030 an estimated 67 million Americans will have arthritis, unless the trend is reversed.

There are not only the physical costs of the disease that affect so many people, but the financial costs to individuals and to the US economy are also staggering. The CDC states that in 2003, the total cost attributed to arthritis in the United States was $128 billion, up from $86.2 billion in 1997.

Access to care for those with arthritis is a main priority for the Arthritis Foundation as well as for other arthritis-related organizations. Patient access to rheumatologists, especially pediatric rheumatologists, is an important need right now in the arthritis and health-care communities, as is access to medicines, treatments, and affordable health insurance.

“It’s our goal that everyone has access to the health care that he or she needs,” says Markle. “We’re working with the Department of Health and Human Services (HHS) and the Centers for Medicare and Medicaid Services (CMS) to ensure that the underinsured and uninsured have access to care through the implementation of the Affordable Care Act. This new law is complicated and varies by state, so we’re working on a toolkit to help patients with arthritis select an insurance plan that meets their needs.”

The Arthritis Foundation

The Arthritis Foundation has two different types of volunteers: e-Advocates, and Ambassadors. An e-Advocate is someone who is willing to contact his representatives through e-mail when he receives an “Action Alert” from the Foundation. In five minutes or less, e-Advocates are able to write to elected officials and tell them that their constituents care about arthritis and how it impacts their communities.

Arthritis Ambassadors do a lot more: They serve as official liaisons between the Arthritis Foundation and their state and federal elected officials. The Ambassador Program serves a strategic function of the

Arthritis Foundation’s mission by establishing and building a strong grassroots network, ensuring that Congress is aware of the needs of people living with arthritis and is primed to take action.

Arthritis Ambassadors also participate in bimonthly Webinars with Arthritis Foundation staff and guest speakers. Every other month Ambassadors are assigned an advocacy task that typically requires less than one hour of their time, and Ambassadors must report their activity to the national office.

Sample Ambassador tasks include the following:

• Recruit new and active advocates in key congressional districts
• Promote Arthritis Foundation public policy priorities and advocacy at local chapter events such as the Arthritis Walk
• Contact members of Congress concerning the legislative and administrative priorities of the Arthritis Foundation
• Attend local town hall meetings sponsored by a member of Congress and make appointments to meet federal and state representatives in their district offices throughout the year
• Invite and encourage members of Congress and state legislators to participate in local Arthritis Foundation events

The Arthritis Foundation’s annual Advocacy Summit, which is held in the spring each year in Washington, DC, is a large event that brings e-Advocates and Ambassadors together from all over the country. There they learn how to advocate and build a continuing relationship with their members of Congress and their staff.

To become an e-Advocate or an Arthritis Ambassador, or for more information, visit www.arthritis.org/advocacy.

Two dedicated and longtime Ambassadors for the Arthritis Foundation are Karen Anderson of Santa Barbara, California, and Mark Haubner, from Long Island, New York. While each has a different personal connection to arthritis, both share a passion for arthritis advocacy.

Anderson’s daughter Kristin was diagnosed with scleroderma at age 15, and Anderson has watched her suffer from the disease for the last 20 years. Wanting to help Kristin as well as others living with arthritis is what made Anderson get involved in advocacy about eight years ago.

“This is an exciting way to get involved,” says Anderson. “When I think of all the volunteer work I’ve ever done in my life, this feels like the most meaningful, because of the difference it can make for so many people.”

Haubner, 58, has osteoarthritis, bursitis, and Ray-naud syndrome and has had several arthritis-related surgeries. Like Anderson, Haubner enjoys being part of a large, national organization because of the impact a large group can have regarding public policy decisions. But he also observes that continuity between national and local efforts is important.

“We get a lot accomplished because we’re there in bulk, in large numbers,” says Haubner. “Advocacy work at the national level is better at influencing public policy compared to at the local level. But so much is done locally, too. When you go home after attending the Advocacy Summit in DC, you start contacting the representatives at your local office about the issues—with phone calls, e-mails, and office visits. You need to have both the national and local offices working together to get things done.”

As an Ambassador, Haubner’s top advocacy priorities are raising funding for research and getting more e-Advocates and Ambassadors on board to help with arthritis awareness and education.

“I’d like to see a cure in my lifetime,” says Haubner. “I think we’ve gotten away from using the word ‘cure’ somewhat. We need to get back to using it and having it be our mission.”

Christine’s Kids

Diagnosed with rheumatoid arthritis (RA) in 1990 at age 43, Christine Schwab hid her disease for 20 years, fearing the loss of her job and career due to the stigma associated with arthritis. Today Schwab, who lives in Newport Beach, California, is a successful television personality and author, specializing in fashion, beauty, lifestyle, and health.

“I thought arthritis was a disease only old people got when I was first diagnosed,” said Schwab. “And working in the entertainment business where everything is about youth, I knew I would lose my career.”

The common misconception of arthritis being “an old person’s affliction” is still out there and thriving among the general public, despite the fact that a large majority of those with the disease are far from being senior citizens. According to the CDC, two-thirds of people with arthritis are under the age of 65. And in all 50 states, 1 in 20 working-age adults (18–64 years old) face work limitations due to arthritis.

Despite her fears about making her arthritis public, Schwab finally broke her silence when she wrote her memoir, Take Me Home From the Oscars, which tells her story of living a life in television while secretly suffering from debilitating pain. She credits the speaking engagements she did when her book came out with igniting her passion for arthritis advocacy.

“Becoming an arthritis advocate wasn’t an overnight thing that happened to me,” says Schwab. “It just evolved organically. My passion to help kids with RA was especially organic. After my book came out, I was getting so much attention and feedback from people visiting my personal Facebook page, especially from parents who had questions and concerns about their child’s RA, that I decided to start Christine’s Kids.”

Christine’s Kids is a community Facebook page that Schwab created about a year ago, as a place where children and their parents can connect with each other and have their stories and voices be heard. Schwab says that she posts anything on the page that can be helpful regarding arthritis. She wants the page to be a resource that people can keep coming back to for information, support, and positivity.

Since becoming involved with arthritis advocacy, Schwab has dedicated herself to working on many different projects with several organizations. She is an Ambassador with the Arthritis Foundation and has participated in speaking engagements, led sessions at the annual Juvenile Arthritis Conference, lobbied on Capitol Hill, and contributed to media projects for the Foundation.

In addition to working with the Arthritis Foundation, Schwab is on the Advisory Board for the Arthritis National Research Foundation, a nonprofit organization dedicated to raising funding for arthritis research. She has also done work with the American College of Rheumatology, a professional organization of rheumatologists and associated health professionals who treat arthritis, and she is a frequent blogger, writing blog posts on her own site (www.christineschwab.com) as well as contributing to Creaky Joints (www.creakyjoints.org), another arthritis organization.

Spreading arthritis awareness through positive media attention is important to Schwab and is something that is much-needed in arthritis advocacy right now, she says, if we want to change the negative attitudes about arthritis and stop the misconceptions surrounding the disease.

Schwab hopes to change the perception of arthritis and “make it into a sexy disease.” She wants everyone to understand that it’s not a disease of the old and crippled and that kids can get it too. Schwab would like to see movies made about arthritis and more books written about it, and to see the subject gain much more television exposure.

“We need to get more positive media attention with messages of hope,” says Schwab. “There’s just not enough of it right now. The media messages that are out there need to be better balanced, too. We need more authors of hope.”

The Global Healthy Living Foundation

One of Christine Schwab’s “authors of hope” is her friend and fellow advocate Seth Ginsberg, whom she describes as the “advocacy guru” for adults and kids. Ginsberg lives in New York but can usually be found on an airport runway somewhere, about to jet off to his next destination to meet with policy makers or to speak at arthritis events.

Ginsberg, who was diagnosed with arthritis at age 13, cofounded the arthritis support community Creaky Joints in 1999. Today Creaky Joints boasts over 55,000 members, including both people affected by all forms of arthritis and their families. It’s become a popular resource and avenue for people who want to connect with each other and share their arthritis stories through blogging, advocacy work, and social media.

Creaky Joints is part of the Global Healthy Living Foundation (GHLF), a nonprofit organization based in New York that advocates at the state, national, and international levels for improved access to care for people with chronic diseases. Right now, the GHLF is focusing on the issue of biosimilar drugs being introduced into the pharmaceutical market, and more specifically keeping these drugs safe for the people who take them. The Healthy Biologics program (www.healthybiologics.org) is a project of the GHLF and is an educational program for anyone who takes a biologic drug such as etanercept (brand name Enbrel), Adalimumab (Humira), or Infliximab (Remicade), to name a few.

The Healthy Biologics program is a state-by-state effort to help make people aware and informed that soon the patents for their biologic drugs will run out, and there will be generics, or biosimilars, on the market. The program is also pushing for cooperation with insurance companies to let people know if they will be switched to one of the biosimilar drugs due to expected lower costs for these products.

“Basic reporting and record keeping of the type of medicines we’re taking, especially these complex biologic medications, is important to us,” says Ginsberg. “It’s not the most glamorous form of advocacy, but it’s important because we’re the lead patient advocacy organization raising awareness about a critical issue that we predict will be on the horizon in as soon as two years. Healthy Biologics gives people a chance to participate in ensuring safety and record keeping of the medicines we rely on.”

Get involved!

Whether you want to advocate for better access to arthritis care, help protect drug safety standards, promote arthritis awareness by sharing your own story in front of a crowd or in a Facebook post, or maybe join an Arthritis Walk and raise money for arthritis research, it’s easy to get involved somehow, at some level.

“Anyone who is interested in becoming an advocate ought to realize that it’s easy to do,” says Ginsberg. “And it will make you feel better! Through social media, and our new networks of friends, family, and community, we can share important messages to 1) inform and 2) encourage involvement. By telling the public what life with arthritis is about, we can paint a clearer picture of it.”

Angela Lundberg is a freelance health-care writer in Minneapolis, Minnesota. She has had RA since 1997.

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