87 Patient and Consumer Groups Object to Proposals to Increase Cost Sharing for Drugs
On February 19, 2019, the Epilepsy Foundation joined 86 other patient and community organizations through the I Am Essential coalition, which the Foundation co-leads, in submitting comments to the Department of Health and Human Services (HHS) urging them to reject proposals that would increase patient cost-sharing as they access life-changing and sometimes, life-saving prescription drugs.
The Foundation also joined another coalition of national patient advocacy organizations and the Consortium for Citizens with Disabilities (CCD) in submitting comment letters. This year, the Administration proposed a number of concerning proposals, including allowing mid-year formulary changes, endorsing copay accumulator programs for brand name medications with generic equivalents, and disallowing any out-of-pocket spending on brand name drugs to count toward out-of-pocket maximums if a generic equivalent is available. The proposed rule made other changes concerning to health care access, including increasing out-of-pocket maximums. Read the comments below.
I Am Essential - NBPP 2020 Comment Letter (February 19, 2019)
Coalition Comment Letter - NBPP 2020 (February 19, 2019)
CCD Health Task Force Comment Letter - NBPP 2020 (February 19, 2019)
38 Patient Groups Speak Out Againist Recent Ruling in Texas v. US
On December 14, 2018, a federal judge ruled that the entire Affordable Care Act (ACA) is unconstitutional because of the recent change in federal tax law that repealed the penalty associated with the individual mandate. The Epilepsy Foundation, along with 37 national patient groups, released a statement speaking out about the ruling in Texas v. US. We anticipate that the ruling will be appealed to the United States Court of Appeals for the Fifth Circuit. The ruling does not affect current health insurance coverage, coverage you have signed up for to receive in 2019, or those who have benefited from Medicaid expansion.
Epilepsy Foundation Speaks Out on New Waiver Guidance from CMS
In late October, the Centers for Medicare and Medicaid Services (CMS) issued a new guidance regarding Section 1332 waivers under the Affordable Care Act (ACA). Currently, these waivers give states the authority to pursue innovative strategies for providing their residents with access to high quality, affordable health insurance while retaining the basic protections of the ACA and maintaining budget neutrality.
The Administration’s newly issued guidance allows states to promote health plans that do not require the same level of coverage or consumer protections set forth by the ACA. States will be able to make short-term and association health plans more widely available and offer subsidies for people to buy these plans. However, these plans have less comprehensive coverage and can exclude or charge people with pre-existing conditions more. In addition, state legislatures will no longer have to approve the waiver plans; that power will rest only with the governor.
The Epilepsy Foundation signed onto a statement with more than 25 national patient organizations expressing deep concern over the new guidance. We firmly support access to quality health care that is affordable and comprehensive, and that meets the needs of individuals with serious and chronic health conditions. We are particularly concerned about the effect the new guidance may have on individuals with pre-existing conditions and the stability of the Marketplace. In December, we submitted a comment letter in addition to signing on to several coalition comments and letters.
I Am Essential Comment Letter - Section 1332 Waivers (December 23, 2018)
EF Comment Letter - Section 1332 Waivers (December 20, 2018)
Coalition Letter - Section 1332 Waivers (December 18, 2018)
Coalition Comment Letter - Section 1332 Waivers (December 18, 2018)
Epilepsy Foundation Signs onto Amicus Brief in Legal Challenge to Short-Term Health Insurance Rule
On October 8, 2018, the Epilepsy Foundation joined 11 other national patient groups in filing an amicus curiae (or friend-of-the-court) brief in support of the U.S. District Court case, Association for Community Affiliated Plans v. United States, challenging the recently finalized federal rule on short-term health insurance plans. The suit was originally filed by the Association for Community Affiliated Plans, National Alliance on Mental Illness, Mental Health America, American Psychiatric Association, AIDS United, National Partnership for Women & Families, and Little Lobbyists on September 14, 2018.
The brief argues that the expansion of these plans from three to almost 12 months, with the ability to renew, will weaken protections for individuals with pre-existing conditions and destabilize the insurance marketplace by siphoning younger, healthier individuals out of the market, leading to increased – potentially unaffordable – premium rates for individuals living with chronic conditions like epilepsy. People with pre-existing conditions are at risk of being underinsured or losing coverage altogether if premiums become too high. Short-term health plans are not a substitute for comprehensive, affordable health care.
Due to the overwhelming risk to people with pre-existing conditions and the insurance market, the amicus brief asks the court to issue a preliminary injunction stopping the rule and preserving current limits on short-terms plans.
Read the full amicus brief here.
Organizations supporting the amicus brief include: American Cancer Society, American Cancer Society Cancer Action Network, American Heart Association, American Lung Association, Cystic Fibrosis Foundation, Epilepsy Foundation, Global Healthy Living Foundation, Hemophilia Federation of America, Leukemia and Lymphoma Society, March of Dimes, National Coalition for Cancer Survivorship, and National Multiple Sclerosis Society.
On Friday, October 26, 2018, the court is expected te begin hearing arguments. Read the statement: Patient and Consumer Groups Urge Federal Court to Issue Preliminary Injunction Against Short-Term Insurance Rule.
Administration Issues Short-Term, Limited-Duration Plan Final Rule
On August 1, 2018, the departments of Health and Human Services, Labor, and the Treasury issued a final rule on short-term limited-duration health plans. The final rule reverses the previous maximum period of short term plans of less than 3 months. Under the final rule, consumers could purchase short-term plans that cover an initial period of just under 12 months and could be renewed for up to 36 months. These plans are not required to cover the ten essential health benefits afforded by the Affordable Care Act (ACA). Short-term plans can also charge more or deny coverage if a patient has a pre-existing condition. Again, as with Association Health Plans, these short-term plans are expected to siphon healthier people out of the marketplace, most likely resulting in higher premiums and further destabilizing the marketplace.
The Epilepsy Foundation signed onto a statement with over 26 other patient advocacy organizations expressing serious concern over the decision to finalize this short-term, limited-duration rule, which will reintroduce health insurance discrimination based on gender, health status, age, and pre-existing conditions.
Association Health Plan Final Rule Released
On June 19, 2018, the Administration released the final rule on Association Health Plans (AHPs), which will expand the definition of an employer, allowing more small businesses and self-employed individuals to join together for the sole purpose of offering health insurance through association health plans. The Epilepsy Foundation, along with 25 other patient advocacy organizations, released a statement regarding the final rule expressing concern over the repercussions the final rule will have on patients with pre-existing conditions or other serious and chronic health issues and the destabilization of the individual marketplace.
In the final rule, AHPs will not be able to deny individuals with pre-existing conditions coverage or charge them more, however these plans will not be required to cover Essential Health Benefits or comply with other patient protections created by the Affordable Care Act (ACA). Without comprehensive coverage, many who purchase these plans will be left underinsured.
Since AHPs do not have to cover all Essential Health Benefits or comply with patient protections created by the ACA, the premiums are expected to be lower and accordingly siphon healthier people out of the marketplace. Premiums are likely to increase for consumers, which will further destabilize the marketplace in which individuals with complex chronic conditions like epilepsy rely on for high-quality, affordable care.
Short-Term Limited Duration Plans Proposed Rule Released
On February 19, 2018 the Department of Health and Human Services released a proposed rule that would allow insurance companies to offer short-term limited duration health plans – which do not have to cover Essential Health Benefits -- for just under 12 months, as opposed to the current limit of just under three months. While short-term limited duration plans currently exist to help individuals navigate insurance coverage gaps, the proposal would allow short-term limited duration plans to become a substitute for comprehensive annual plans. These short-term limited duration plans would be able to charge lower premiums and draw in younger, healthier individuals because they do not have to cover all Essential Health Benefits or comply with patient protections created by the ACA. These changes would destabilize the ACA marketplace on which people with complex chronic conditions like epilepsy who rely on for quality, affordable care.
We joined other patient advocacy groups in a statement express our concerns with the proposal that would allow short-term limited duration plans to become a substitute for comprehensive annual plans.
Coalition statement - Short-Term Limited Duration Plans- Proposed Rule (February 20, 2018)
Read more letters in the sidebar.
Association Health Plans Proposed Rule Released
On January 4, 2018 the Department of Labor released a proposed rule that would expand the definition of an employer, allowing more small businesses and self-employed individuals to join together for the sole purpose of offering health insurance through association health plans. It is unclear how these association health plans would be regulated and importantly, they would not be required to cover Essential Health Benefits and guarantee other patient protections created by the ACA. These plans would be able to charge lower premiums and draw in younger, healthier individuals because they do not have to cover all Essential Health Benefits or comply with patient protections created by the ACA. These changes would destabilize the ACA marketplace on which people with complex chronic conditions like epilepsy who rely on for quality, affordable care. We are bringing together state and national patient and community groups to issue public comments on our concerns about how the proposal could negatively impact access to quality, affordable health care.
I Am Essential Comment Letter - Association Health Plans Proposed Rule (March 6, 2018)
Read more letters in the sidebar.
President's Executive Order on Association Health Plans and Short-Term Limited Duration Plans Could Undermine Individual Insurance Marketplace
On October 12, 2017 the President issued an executive order directing federal agencies to explore changes to association health plans and short-term limited duration plans. In response to this directive, the Departments of Labor and Health and Human Services have issued proposed rules earlier this year.
Any changes to the individual and small group insurance market can have a profound impact on access, quality and affordability for people living with complex chronic conditions like epilepsy. If association health plans and short-term limited duration plans are allowed to provide less comprehensive coverage they can charge lower premiums and draw in younger, healthier individuals and this shift comes at the high cost of destabilizing the ACA marketplace. By eroding the stability of the individual and small employer insurance market, we risk returning to the days when people with pre-existing conditions couldn’t obtain health insurance, could only obtain a high-cost policy that did not cover medications and services related to their pre-existing condition, or had to rely on severely underfunded high-risk pools with waiting periods for coverage. People living with serious and complex chronic conditions likely would not be able to obtain insurance policies that meet their needs with association health plans and especially with short-term limited duration plans, and they would face higher cost-sharing and out-of-pocket costs in their ACA marketplace plans.
Epilepsy Foundation Submits Comments to Oppose HHS Proposal to Scale Back Essential Health Benefits
On November 27, 2017, the Epilepsy Foundation submitted comments to U.S. Department of Health and Human Services. The letter emphasizes concern over the proposed rule, Notice of Benefit Payment Parameters for 2019, which would allow states to scale back essential health benefits insurers must offer to beneficiaries in the future. The Epilepsy Foundation also signed onto an I Am Essential comment letter with 138 other patient and community organizations. Read the letters below.
I Am Essential NBPP Comment Letter (November 27, 2017)
Epilepsy Foundation NBPP Comment Letter (November 27, 2017)
Epilepsy Foundation Joins Statements and Letter Opposing Repeal of Individual Mandate
On November 14, 2017, 16 patient consumer groups issued a statement in relation to the current tax reform debate, which now includes proposals to repeal the individual mandate for health insurance coverage. Any changes Congress makes to our health care system should be focused upon expanding access to quality, affordable health coverage for all Americans. Eliminating the individual mandate tax penalty will result in 13 million fewer Americans having health insurance and an increase in premiums, especially for those with chronic conditions. Read the full statement below.
Coalition statement - CBO individual mandate score
On November 28, 2017, patient consumer groups sent a letter to senators expressing opposition to the repeal of the individual mandate. Read the letter below.
Patient Group Letter - IM Senate Letter (Nov 28 2017)
On November 30, 2017, patient consumer groups issued a statement highlighting CBOs analysis that the ACA Stabilization Bill drafted by Sens. Alexander and Murray would not fix a repeal of the individual mandate, which is being proposed as part of tax reform proposals. CBO confirmed that repealing the mandate would raise premiums in the individual health insurance market by an average of 10 percent, even with passage of the Alexander-Murray bill. Read the full statement below.
Group Statement - IM Repeal Fix (Nov 30 2017).pdf
Epilepsy Foundation Has Joined More Than 200 Patient Groups to Support Bipartisan ACA Stabilization Bill
The Bipartisan Health Care Stabilization Act of 2017, introduced by Senators Alexander and Murray in October 2017, would help to stabilize the individual insurance market and the ACA Marketplace. See the press release below for the full list of supports of this bill.
Sen. Alexander Nov. 1 Press Release
UPDATE: ACA and the Congressional Health Care Debate - Bipartisan Bill Proposal
On October 19, 2017, Senators Alexander and Murray, leaders of the Senate Committee on Health, Education, Labor and Pensions, introduced a bipartisan bill to stabilize the Affordable Care Act (ACA) Marketplace. This bill, the Bipartisan Health Care Stabilization Act of 2017, has many cosponsors from each party. The proposal would extend cost-sharing reduction (CSR) payments, and includes other mechanisms of stabilization. CSRs help low income individuals and families (who make up to 250% of the federal poverty line) cover out-of-pocket health care costs like deductibles and copays for plans offered in the ACA Marketplace. The proposal would also preserve and support key protections for individuals with pre-existing conditions.
The Epilepsy Foundation, as part of the I Am Essential coalition, has previously applauded the HELP committee's bipartisan efforts, which included summer hearings with a variety of stakeholders like Governors and Insurance Commissioners. We look forward to engaging in the next steps of this process with the broader patient community - which will include a thorough and ongoing review of this proposal's impact on patients and consumers as the bill moves through regular order.
The Alexander-Murray deal signals an encouraging move away from partisan proposals to "repeal and replace" the ACA that also included reforms to Medicaid - on which more than a third of people living with epilepsy rely on for their care.
On October 18, 2017, we joined a statement with many others in the patient community in support of the agreement. Read the statement below.
HELP Stabilization Statement (Oct 19, 2017)
On October 25, 2017, we sent letters to Sens. Alexander and Murray, and additional cosponsors, in support of the bipartisan effort and the bill. Read the letter below.
EF Letter Alexander Murray (Oct 25, 2017)
On October 26, 2017, after the nonpartisan Congressional Budget Office (CBO) published a score of the Alexander-Murray bill, we joined a statement with many others in the patient community continuing to express support for the bill and encouraging others to join as sponsors. Read the statement below.
CBO Score Statement - Bipartisan Health Care Act (Oct 26, 2017)
Administration Issued Executive Order on ACA Reform
On October 12, 2017, President Trump issued an executive order that directs agencies to make changes to current implementation of the Affordable Care Act (ACA). Federal agencies will need to issue rules in order to effectuate this order. This executive order would encourage association health plans to enter the insurance market and change the rules governing the length and renewability of short-term catastrophic health insurance plans. The impact that these changes could have on people with pre-existing conditions like epilepsy is significant because these new types of plans would not be required to cover the Essential Health Benefits. Allowing some plans to not cover these comprehensive benefits would mean that cost for plans that do will skyrocket - and these are the plans that those with series health needs rely on for meaningful coverage.
The Epilepsy Foundation joined a statement with many others in the patient community in opposition to this executive order. Read the statement below.
Executive Order Statement (Oct 14 2017)
Administration Announced Discontinuation of CSR Payments
On October 12, 2017, President Trump announced that the administration would no longer continue the cost sharing reduction (CSR) payments, which are part of the Affordable Care Act (ACA). These payments help individuals and families up to 250% of the federal poverty line cover out-of-pocket health care costs like deductibles and copayments.
The Epilepsy Foundation joined a statement with many others in the patient community expressing concern for this decision and urging Congress to fund this program. Read the statement below.
CSR Payments Statement (Oct 13, 2017)
Senate Will Not Vote on Latest Repeal and Replace Proposal
On September 26, 2017, Senate leadership and the authors of the latest proposal to "repeal and replace" the ACA, Sens. Graham and Cassidy, held a press conference to announce that they would not be holding a vote on the Senate floor on the proposal this week prior to the expiration of a special procedural mechanism that would have allowed the bill to pass with only 50 votes.
They also announced that they hope to continue discussions to eventually develop a health care reform proposal with more support.
Senate Again Considering Dangerous Health Care Bill
On September 13, 2017, Senator Graham introduced a new ACA "repeal and replace" proposal as an amendment to the House-passed American Health Care Act, which would threaten health insurance coverage for millions of Americans - including many with epilepsy. This bill, referred to widely as Graham-Cassidy, is similar to other proposals defeated this summer. It would drastically cut the entire Medicaid program and could allow some insurance plans to drop coverage for basic services, including emergency care, prescription medications, and chronic disease treatment.
On Monday, September 25, the Senate Committee on Finance held a hearing on this proposal.
Senate Votes Down Bill to Unravel ACA
On July 28, 2017, the Senate ended debate and voted on the Health Care Freedom Act, a bill that would have left millions without health coverage and further destabilized access to health care for many Americans. This bill was defeated and now the health care debate can move on as a bipartisan effort to help all Americans including those with epilepsy and chronic conditions.
Senate Debating ACA Repeal Proposals
On July 25, 2017, the U.S. Senate voted in favor of a motion to proceed and began debate on the Senate floor on efforts to "repeal and replace" the Affordable Care Act (ACA). Discussions continue on the Senate floor on July 26 as senators work to identify a proposal that may garner the necessary votes (50) for final passage of a bill in the Senate. If the Senate passes a bill, it would then go to the House for a vote before heading to the President, or it could go to conference where any differences from the House-passed American Health Care Act (passed on May 4, 2017) would be resolved.
The Epilepsy Foundation is monitoring the floor debate closely and has been expressing opposition to any proposal that would be harmful to people living with epilepsy, especially those that would erode patient protections created by the ACA and cut Medicaid funding - a program that provides health care for more than one third of people living with epilepsy. The Epilepsy Foundation has communicated consistently with Congress to highlight issues with bills that are currently being debated.
CMS Announces Streamlined Direct Enrollment Process for Consumers Seeking Exchange Coverage
On May 17, 2017, the Centers for Medicare & Medicaid Services (CMS) announced a simplified direct enrollment process for consumers signing up for individual market coverage through health care exchanges that use HealthCare.gov. Consumers applying for individual coverage through direct enrollment partners will now be able to complete their application using only one website, enabling easier access to healthcare comparison shopping. In the past, consumers who signed up for health care coverage using a third-party website were completed to HealthCare.gov to complete their application.
Learn more about this new direct enrollment process here.
CMS Announces Checklist for State Innovation Waiver Applications
Section 1332 of the Affordable Care Act (ACA) allows states to apply for State Innovation Waivers to pursue innovative strategies for providing high-quality, affordable health coverage to their residents. The Centers for Medicare & Medicaid Services (CMS) has produced a checklist to help states pursuing State Innovation Waivers as they develop and complete the required elements of the application, with specific requirements related to high-risk pools and state reinsurance.
Learn more about the CMS State Innovation Waiver Checklist here.
House of Representatives Votes to Approve AHCA
On May 4, 2017, the U.S. House of Representatives voted on and passed the American Health Care Act (AHCA), which would repeal critical patient protections created by the Affordable Care Act (ACA) and radically restructure the way the federal government supports states’ Medicaid programs. The AHCA would cut Medicaid funding by $840 billion over the next ten years by instituting per-capita caps on federal support to the states for the program; and allow states to eliminate Essential Health Benefits requirements for plans offered in the ACA Marketplaces, which ensure plans cover prescription drugs, hospitalization, and emergency services, among other basic benefits.
Consortium for Citizens with Disabilities (CCD) Reacts to House Passage of AHCA
The Consortium for Citizens with Disabilities (CCD), the country’s largest coalition of national disability groups, is gravely concerned about the House of Representative’s passage of the American Health Care Act. The AHCA will harm tens of millions in the United States, but especially people with disabilities who will face coverage loss, higher costs, and fewer options. Read the full statement below.
CCD Statement on AHCA (May 4, 2017)
Epilepsy Foundation Joins Coalition Letter Urging Congress to Oppose AHCA Because of Cuts to Medicaid
On March 16, 2017, the Epilepsy Foundation joined members of the Consortium for Citizens with Disabilities (CCD) and other national organizations in a letter to Congress expressing serious concerns with the AHCA. The letter urged members to oppose the legislation as currently drafted because of significant restructuring and cuts to the Medicaid program, which provides lifesaving medications and health care services for more than a third of people living with epilepsy, including children from low-income families and/or with severe forms of epilepsy, as well as children and adults living with disabilities. Read the letter below.
CCD Coalition Letter on AHCA (March 16, 2017)
Epilepsy Foundation Joins Coalition Letter Urging Congress to Protect Medicaid
On March 3, 2017, the Epilepsy Foundation joined 100 national organizations representing older Americans and people with disabilities in a letter to Congressional leadership urging Congress not to make radical structural changes to Medicaid through block grants or per capita caps. These kinds of changes would lead to fewer services and higher health care costs for people with epilepsy, putting their care at risk. Read our letter below.
Coalition Letter to Congressional Leadership on Protecting Medicaid (March 3, 2017)
Epilepsy Foundation Joins 200 Patient Advocacy Groups in Letter to HHS Secretary Price
The Epilepsy Foundation, as a leader of the I Am Essential coalition, joined 200 patient groups, including all Epilepsy Foundation chapters and affiliates across the country, in sending a February 10, 2017 letter to recently-confirmed Secretary of Health and Human Services Dr. Tom Price, urging him to maintain existing patient protections enacted in the Affordable Care Act. It is especially important to advocate for patient protections like the Essential Health Benefits and patient access to prescription drugs their providers prescribe as Congress and the Administration consider changes to current healthcare laws and regulations.
IAE Letter to HHS Secretary Dr. Tom Price (Feb. 10, 2017)
Read the I Am Essential press release on the February 10 letter here.
Epilepsy Foundation Sends Letter to President-elect and Congressional Leadership Opposing Current ACA Repeal Efforts
On January 11, 2017, the Epilepsy Foundation sent a letter to President-elect Trump and Congressional leadership, highlighting the provisions in the Affordable Care Act that have been important to the epilepsy community. Read our letter at the link below.
Epilepsy Foundation Letter to President-elect Trump and Congress on the Affordable Care Act (Jan. 11, 2017)