SJIA Foundation stands with other patient organizations in opposing the American Health Care Act

The US House of Representatives passed the American Health Care Act yesterday, May the 5th, 2017. If this bill becomes law, it will impact the health care of millions of Americans. It will be especially hard on children and adults with rare diseases, including children living with Systemic Juvenile Idiopathic Arthritis (SJIA).

The Systemic JIA Foundation joins numerous other patient groups in opposing this legislation. This law could have disastrous consequences for children living with SJIA and other Autoinflammatory Diseases, who depend on expensive medications to keep the disease under control. Some of the potential impacts of the AHCA are:

• Insurers could charge higher prices to people with pre-existing conditions, including rare diseases like Systemic JIA.
• The AHCA would make huge cuts to medicaid and change the financing structure further jeopardizing patients who depend on it.
• Allow states to bring back high risk pools which have been proven failures time and again and do not adequately cover people with chronic diseases.
• Remove protection against annual and lifetime caps even for employer-sponsored plans. This is especially risky for a pediatric population who could easily run through their lifetime limits during childhood, sometimes by a very young age.
• Allows states to waive the guarantee of essential health benefits, segmenting the market into plans for sick people and plans for healthy people, and likely driving up the cost of plans that provide the benefits sick people actually use.

All these changes can negatively impact anyone living with a chronic disease, but the changes are particularly devastating for diseases like SJIA, which can often only be controlled by expensive biologic medications. The challenges and costs facing families dealing with SJIA are incredibly difficult, and are a complex mix of medical, emotional, and financial strains. Most children with SJIA require frequent medical and physical therapy appointments and repeated hospital stays, many of them miss school and normal childhood activities, and often one or both parents miss work or must stay home to provide constant care for their child. SJIA families are already under a tremendous amount of pressure, and the provisions of the AHCA only compound their struggles.

If this bill becomes a law, SJIA families will pay more for healthcare, and many will have to forgo essential treatment. If a SJIA family is already struggling financially, the AHCA can push them over the edge. The result will be disabilities and deaths due to lack of treatment, and personal bankruptcies due to lack of or inadequate insurance, and astronomical out of pocket health care costs.

We are joining numerous other patient organizations in opposing these changes to the health care system and advocating for adequate, affordable health insurance . Here is a partial listing of patient organizations opposing the AHCA.

• Cystic Fibrosis Foundation
• Arthritis Foundation

American Cancer Society
Creaky Joints
National Organization of Rare Diseases