The Respected Voice of Melanoma Across the Nation
Policy & Advocacy
When drugs are approved, legislation is drafted, and research is assessed, AIM is at the table, speaking loudly and clearly on behalf of patients and their families. We are the trusted advisors for medical boards, government agencies, and pharmaceutical companies on critical topics that affect melanoma patients.
One of many indications of AIM’s leadership in the world of melanoma is the invited presence of our staff on boards and committees that directly affect patients. Among the many committees and boards the late Val Guild sat on, perhaps her work with AJCC committee for melanoma is one of the best examples of her advocacy work. It is the body that sets melanoma staging guidelines for the entire nation, and she was the only patient advocate during her tenure invited on to that committee. Sam Guild sits on the National Comprehensive Cancer Network guidelines committee, as well as SWOG and ECOG, which are national cancer research networks. Alicia Rowell is the public member of the board of the American Society of Dermatopathology, the professional organization of those best trained to diagnose your melanoma.
AIM has been a national leader in three areas of legislation that directly affect melanoma patients and their families: indoor tanning, oral parity, and child sun safety education, and sunscreen use in the schools. We need your help in all three areas. Read below for what we do and how to help.
Every year in the U.S. nearly 30 million people tan indoors. Of these, 2.3 million are teens. Melanoma rates among young women have soared 50% since the 1980’s, a trend that has paralleled a rise in the use of tanning devices.
The World Health Organization (WHO), the American Medical Association (AMA), the American Academy of Pediatrics (AAP), and the American Academy of Dermatologists (AAD) have all called for a ban on ALL indoor tanning by minors. The United States Food and Drug Administration also recommends that no one under the age of 18 use these devices. Read more about the dangers of indoor tanning.
AIM at Melanoma has been in a trailblazer in getting legislation introduced throughout the country. AIM led the effort in California to make it the first state to prohibit minors under the age of 18 from commercial tanning devices. Other states have since followed suit.
Presently, there are only 20 states, and the District of Columbia, that have passed laws completely banning the use of commercial tanning devices for minors under 18 years of age: California, Illinois, Nevada, Texas, Vermont, Minnesota, Louisiana, Hawaii, Delaware, North Carolina, New Hampshire, Massachusetts, Kansas, West Virginia, Oklahoma, Rhode Island, New York, Maryland, Maine, and Virginia.
Washington and Oregon passed laws prohibiting minors under the age of 18 from using commercial indoor tanning devices but allow for an exception when the devices’ use is prescribed by a physician, a provision we oppose because we believe medical conditions should be treated by medical professionals with medical equipment that is regulated. There are other states in the U.S. that have restrictions on a minor’s use of indoor tanning parlors but typically all that is required to bypass the restriction is a signed permission slip from a parent or guardian. AIM opposes laws that provide an exception for parent permission or physician prescription; our goal is to ban indoor tanning for all under 18.
Read more about indoor tanning legislation.
The cancer treatment landscape—especially for melanoma—has changed dramatically over the last decade. More effective, less debilitating, and easier to administer therapies are now available for many cancers.
Many of these new therapies are easier to administer because they come in pill form rather than being administered intravenously or injected in liquid form, an enormously important innovation for both patients and healthcare providers.
Many insurance plans, however, refuse to cover oral cancer treatments at the same rate as intravenous or injected cancer treatments. The discrepancy is likely related to how insurers traditionally classified medications, but recent medical advances have wiped out those distinctions: Now, some of the most powerful cancer therapies come in pill form.
Because some of the newer, more effective treatments are administered orally, insurers’ failure to update their reimbursement policies creates a situation where potentially better treatments are cost-prohibitive for many patients. This discrepancy in coverage can be tens of thousands of dollars each year, a difference that forces some patients to delay their recommended treatments—or forgo them entirely.
The discrepancy in coverage also means some patients are simultaneously battling cancer and their insurance companies in order to access the treatment they need at a fair price. Insurance appeals can take months, and when a patient is fighting cancer, a few months’ delay is potentially deadly.
Oral parity is the term that is used to describe the efforts to make sure
there is no difference in cancer treatment reimbursement policies.AIM has helped pass oral parity legislation in many states across the country and is currently a member of a national coalition in the fight to pass federal legislation to ensure oral parity through the Cancer Drug Parity Act (HR 1730/S.741).
Child Sun Safety Education & Sunscreen Use
AIM has also been involved in efforts to provide K-12 sun safety education and allow for sunscreen use in schools.
We know that your risk for melanoma doubles if you’ve had more than five sunburns. We also know that even one blistering sunburn in childhood or adolescence more than doubles your chances of developing melanoma later in life. Protecting today’s children from developing melanoma tomorrow is a critical goal.
In 2005, at the request of AIM at Melanoma’s Founder & then President, Valerie Guild, then-state Senator Barbara Leff authored a bill to provide free sun safety curriculum in Arizona schools. Today, Sunwise continues to provide the curriculum as well as assemblies, staff training, and other resources to its schools, and educational resources for the general public, in order to reduce skin cancer in the state.
The SunWise Skin Cancer Prevention Program primarily targets children in grades K-12 with the goal of establishing healthy and habitual behaviors that will protect children through their development and beyond, lowering the risks related to cumulative sun exposure. The program acts as a resource by distributing sun safety curriculum to educators and assisting schools with developing sun safety policies. The SunWise Program is also part of the Empower program, which allows childcare facilities to pledge to adopt 10 health standards, including sun safety, in exchange for a reduced licensing fee.
AIM is helping with similar education efforts in Nevada.
In addition to sun safety education, AIM has been lent its voice to the nationwide effort to allow sunscreen use by children in schools. Why are these efforts necessary? The U.S. Food and Drug Administration (FDA) considers sunscreen an over-the-counter drug, which has led many schools to limit student access to sunscreen and organizations like AIM to push for reconsideration of the limitations.
A number of states have passed laws permitting students to use sunscreen in school without a doctor’s permission.
Critics of laws allowing children to use sunscreen in schools cite a multitude of concerns—liability, misuse, and parental control.
Ultimately, AIM believes the language of the bill is critical—and to that end, there are some bills allowing sunscreen use that AIM has not supported because of problematic wording, usually around liability issues.
Become an Agent of Change
As a citizen and a constituent, you are in a powerful position to influence policymakers. The AIM at Melanoma Foundation needs your help! Help us educate and influence legislators on the dangers of indoor tanning, the need for oral parity legislation, and the benefits of child sun safety education and sunscreen use. AIM’s Public Policy Committee is calling for volunteers to act as legislative advocates at the local level. The primary duty of these volunteers is to write or visit the local offices of your state and federal representatives in order to urge them to support legislation.
We welcome your support and ask you to contact us if you would like to help our efforts.