Eczema Advocacy & Legislative Efforts

Our government plays a critical role in the health of our nation. It funds large-scale medical research projects, manages entitlement programs such as Medicare and Medicaid, and crafts laws that support and promote access to care. For these reasons and more, it’s important that our lawmakers understand the health needs of people living with eczema.

NEA has a three-pronged approach to advocacy:

  1. Raise awareness among members of Congress and within federal agencies on just how eczema affects the lives of those with the disease and their families;
  2. Press for policies and laws that ensure access to affordable, effective eczema treatments;
  3. Increase the amount of money allocated at the federal level on eczema research to better understand and treat this disease.

To reach as many lawmakers as possible, the National Eczema Association (NEA) partners closely with patient and provider advocacy organizations. One such partnership is with the State Access to Innovative Medicines Coalition. This coalition is composed of national organizations and members work together to help ensure that patients across the nation have access to the treatments that they need.

Our policy priorities and initiatives

Eczema awareness

Eczema is a serious inflammatory disease that has a significant impact on the lives of those dealing with the condition. This is known as “burden of disease.” NEA works to raise awareness with lawmakers about the realities of life with eczema including:

  • Time spent each day managing or preventing symptoms;
  • The effect of eczema symptoms on work or school performance;
  • How eczema pain interferes with quality of life;
  • The impact on individuals and families of disrupted sleep due to eczema;
  • Comorbid conditions associated with eczema such as asthma, mental health issues and severe infections;
  • The cost of eczema on the individual, families, employers and society.

Access to care

We believe what treatment you use to manage your eczema is a decision that belongs to you and your health care provider – and to you two only.

NEA works to control health insurance cost-cutting measures that interfere with you and your doctor’s ability to make the best choices about your health. These include:

Step therapy

Also known as “fail first,” step therapy requires a patient to try and fail another (usually less expensive) drug before the insurer will cover the medication originally prescribed by the doctor.

NEA Policy Priority: Work with health insurance companies to amend step therapy requirements when the patient has already tried and failed the “step” drug, or the drug is not right for patient health either because of potential side effects or because the drug is ineffective for the patient’s type and severity of eczema. 

Prior authorization

Prior authorization requires your health care provider to get approval from your insurance company before prescribing a particular medication. This layer of administrative complexity adds an unnecessary burden on doctor office staff and slows down a patient’s ability access medication, delaying symptom relief.

NEA Policy Priority: Encourage legislation that requires insurers to use prior authorization processes which are standardized, easy-to-use and sensitive to the health needs of patients.

Non-medical switching

Non-Medical switching occurs when an insurer changes its formulary, the list of drugs that it covers, during the middle of a contract year and requires its members to change over to the new drugs instead of keeping them on the drugs that their doctors have prescribed. Some states ban health plan from mid-year formulary changes, but most do not.

NEA Policy Priority: Prohibiting insurers from requiring patients to switch to a new drug during the middle of a plan year, except to comply with changes compelled by federal action.

Out-of-pocket costs

Scientific innovation has brought many new medications that are targeted and for many, effective in controlling disease symptoms. However, the cost of these “specialty drugs” are increasingly being passed on to patients by insurance companies in the form of higher co-payments. These higher out-of-pocket costs can make important, life-altering treatments out of reach for many people managing serious chronic diseases.

NEA Policy Priority: Advocate for the passage of state legislation that caps out-of-pocket costs (co-payments, coinsurance limits, and prepayment requirements) on specialty drugs.

Network adequacy

Network adequacy refers to the size of a health insurer’s network of providers relative to the size of the insured population, and its ability to deliver covered benefits and services quickly and conveniently for policyholders. Most states have requirements in place but changes in federal and state law could erode patients access to the providers who manage their care.

NEA Policy Priority: Requiring insurers to maintain networks of providers which are sufficiently trained to meet the health care needs of their members impacted by eczema.

Copay accumulators

Some insurers and pharmacy benefit managers (PBMS) are prohibiting copay cards or manufacturer coupons from counting towards 1. A patient’s deductible and 2. The out-of-pocket maximum.

NEA Policy Priority: Requiring insurers to include any amounts paid by the patient or paid on behalf of the patient to the out-of-pocket maximum.

Surprise billing

Surprise billing typically occurs when you receive care at an in-network facility but get a bill for an out-of-network service or provider.

NEA Policy Priority: Advocate for the passage of legislation that would prohibit patients from being surprise billed for unexpected out-of-network care.

Download the NEA position statement on access to care issues affecting the eczema community.

Get involved with NEA’s advocacy efforts

Millions of Americans have eczema. Millions of Americans cope with this painful, unpredictable disease that starts with the immune system and ends with itchy, dry, rashy skin that covers the body. Millions of Americans with eczema spend their days beating back flares and avoiding triggers, trying to reduce the impact of this disease on every part of their lives, wanting relief.

1. Join NEA Ambassadors

Are you or someone you love one of these millions? If so, we’re asking you to put some skin in the game and join our community of advocacy Ambassadors.

Ambassadors work with NEA staff and fellow advocates to deepen their understanding and engagement in areas that influence decision-makers and affect legislation, including but not limited to:

  • Awareness of eczema’s true burden among policy and decision-makers
  • Access to affordable, effective treatments
  • Budget allocation for research to better understand and treat eczema

Learn more about NEA’s Ambassadors.

2. Help secure critical eczema research funding in FY25

The U.S. Department of Defense’s Peer-Reviewed Medical Research program provides vital funding for innovative, high risk/high reward medical research. In 2022, for the first time ever, NEA advocates and eczema champions in Congress secured eczema’s eligibility for this crucial funding during fiscal year (FY)2023. However, this inclusion must be renewed each year.

We were disappointed to see that the final FY 2024 appropriations bills recently passed by Congress level-funded the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC), and did not include “eczema” on the annual list of conditions deemed eligible for study through the Department of Defense’s Peer-Reviewed Medical Research program.

Take action now – Send an email to your legislator

NEA’s letter to Congress requesting funding for eczema

3. Don’t allow SelectHealth to take away access to essential eczema treatment

In June 2023, NEA learned that eczema patients in Utah are at immediate risk of losing access to an effective treatment. We want to make sure the eczema community, in Utah and beyond, is aware of the situation and knows what steps you can take to stop it.

Take action now – Send an email to SelectHealth

Statement from CEO Julie Block on SelectHealth denying access to eczema treatment

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