Government Relations Update - October 2024

Government Relations Update - October 2024
The Government Relations Update for October 2024 covers various initiatives and advocacy efforts by the National Bleeding Disorders Foundation at both the federal and state levels. Grassroots advocacy efforts have been launched through "Voices for Policy Change" to highlight key issues such as the importance of Hemophilia Treatment Centers. Federal efforts include pushing for the issuance of a proposed rule to protect patients from copay maximizers and advocating for enhanced advance premium tax credits under the Affordable Care Act. Additionally, comments have been submitted regarding the U.S. Pharmacopeia classification of drugs for bleeding disorders. State-level advocacy efforts are also highlighted, with various initiatives in New Jersey, New York, North Dakota, and Pennsylvania. Various state chapter advocacy days are scheduled for 2025 to address bleeding disorders issues at the local level. The update emphasizes the importance of civic engagement, including voting in the upcoming November elections to make your voice heard.

Government Relations Update - September 2024

Government Relations Update - September 2024
The National Bleeding Disorders Foundation (NBDF) has launched the "Voices for Policy Change" video series to educate and empower individuals on legislative issues related to bleeding disorders advocacy. The series features videos from community members, advocates, and healthcare providers discussing important advocacy initiatives such as copay accumulators and tips for legislative meetings. Additionally, NBDF is supporting legislation such as the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act and the Creating Hope Reauthorization Act. The organization is also actively engaged in discussions surrounding the regulation of pharmacy benefit managers and the impact on patient access to prescription drugs. State-level advocacy efforts include collaborating with other patient advocacy groups on prescription drug affordability policies in states such as Colorado, Oregon, and Nevada. Additionally, NBDF is participating in meetings and events to address healthcare policies at both the federal and state levels.

Government Relations Update - August 2024

Government Relations Update - August 2024
The August 2024 Government Relations Update highlights key developments in federal and state healthcare policies. One significant change is the Medicaid Unwinding following the end of the COVID-19 public health emergency, resulting in large coverage losses for approximately 25 million Americans. The Centers for Medicare and Medicaid Services are providing a special enrollment period to help those transitioning to Marketplace coverage. The article also addresses medical debt issues and the need for a permanent extension of the Affordable Care Act's enhanced premium tax credits. Additionally, there are updates on state legislation in California, Michigan, Minnesota, and Oregon related to rare diseases, pharmacy benefit managers, copay accumulators, and drug affordability. The update also includes information on the upcoming Bleeding Disorders Conference, featuring sessions on insurance, patient assistance programs, policy updates, and treatment product safety and supply.

Government Relations Update - April 2024

Government Relations Update - April 2024
In April 2024, the Department of Health and Human Services released a final rule on non-discrimination protections in health care under the Affordable Care Act. The HELP Copays Act has gained support in Congress, with increased cosponsors since NBDF's Washington Days. The 2025 Notice of Benefit and Payment Parameters includes a on copay maximizer policies for state-regulated ACA marketplace plans starting in 2025. In state updates, California's AB 2180 passed the Assembly Health Committee, while Maryland's SB 595 faced challenges due to amendments. Missouri's SB 844 proposes adjustments to health benefit plan calculations, while Mississippi established a Rare Disease Advisory Council. Various states are working on copay accumulator legislation and advocating for better access to care for rare diseases. Key legislative developments are being closely monitored for updates and progress.

Court Rules in Favor of Patients regarding Copay Accumulator Adjustor Programs

Court Rules in Favor of Patients regarding Copay Accumulator Adjustor Programs
In a major victory for patients who depend on prescription drugs, Judge John D. Bates of the U.S. District Court for the District of Columbia struck down a federal rule that allowed health insurers to not count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs.

Government Relations Update - August & September 2023

Government Relations Update - August & September 2023
Explore the latest updates on federal healthcare advocacy, including the progress of the HELP Copays Act with bipartisan support, Congressional discussions on plasma safety, and NBDF's state-level efforts in Massachusetts, Michigan, Ohio, Oregon, Pennsylvania, and Wisconsin, culminating in the upcoming 2023 Insurance and Reimbursement Conference.

Coalition Advocates for Substance Use Disorder/Behavioral Health Services for Patients With Bleeding Disorders

Coalition Advocates for Substance Use Disorder/Behavioral Health Services for Patients With Bleeding Disorders
Discover the coalition's mission to improve mental health services access for bleeding disorder patients. Learn about their efforts to change guidelines.

NHF Applauds Congressional Enactment of The Hemophilia SNF Access Act

NHF Applauds Congressional Enactment of The Hemophilia SNF Access Act

The National Hemophilia Foundation is thrilled to announce that its top legislative priority in 2020, The Hemophilia SNF Access Act, was included in the end-of-year omnibus federal spending and economic relief package passed by Congress on December 21, 2020 (HR 133, The Consolidated Appropriation

It’s Now or November: Deadline for 2014 Plan Enrollment Approaching!

It’s Now or November: Deadline for 2014 Plan Enrollment Approaching!
With less than 3 weeks before the end of open enrollment into health insurance coverage for 2014, navigators and other consumer assisters continue to field tough questions from individuals and families exploring their coverage options. To help answer those questions, Georgetown University’s Center on Health Insurance Reforms created a comprehensive resource guide on private health insurance and the new health insurance marketplaces.

Getting the Most from Your Benefits

Getting the Most from Your Benefits
The ACA established new appeal rights for consumers facing a denial of a benefit or service from their health plan. As consumers start to use their new coverage, it’s worth taking a look at the health plan appeals process required of all new (non-grandfathered) plans and what these new rights mean for patients.

New Year, Newly Insured

New Year, Newly Insured
Overcoming significant hurdles since the launch of the website Healthcare.gov on October 1, 2013, an estimated 2.1 million Americans have enrolled in private health insurance plans offered through the newly created health insurance marketplaces. 

NHF Partners with PSI in the CAC Program

NHF Partners with PSI in the CAC Program
Many consumers will likely turn to their hemophilia treatment centers (HTCs) for information about health insurance coverage options. We are happy to announce that the National Hemophilia Foundation (NHF) and Patient Services, Inc. (PSI) have partnered to assist consumers with enrollment in the marketplaces by having PSI designated as a certified application counselor (CAC) organization to ease this transition. 

ACA Implementation Continues Amid Website Woes

ACA Implementation Continues Amid Website Woes
As of the end of November, the fate of the implementation of the Affordable Care Act’s (ACA’s) health insurance marketplaces, and the various deadlines facing consumers and insurers over the next few months remain uncertain. The NHF Public Policy team continues to closely monitor implementation of the ACA on both federal and state levels.

Delaware Passes Specialty Tier Bill, Advocacy Continues on Federal Level

Delaware Passes Specialty Tier Bill, Advocacy Continues on Federal Level
Delaware Specialty Tier Bill On July 23rd Governor Jack Markell signed a bill that limits out-of-pocket (OOP) costs for specialty drugs into law.  Starting January 1, 2014, the amount paid through co-insurance or co-payment will be limited to $150 per month for a 30-day supply of any specialty drug, including bleeding disorders therapies.

Background Information on Washington Budget Policy

Background Information on Washington Budget Policy
On New Year’s Day, Congress narrowly avoided the dreaded fiscal cliff. However, there are still numerous fiscal concerns, including the potential for large spending cuts. With Washington Days just around the corner, NHF has prepared a brief summary of Washington budget policy to help guide you through some of the concerns and what impact these negotiations could have on our community. 

HHS Releases ACA Regulations

HHS Releases ACA Regulations
On November 20, the Department of Health and Human Services (HHS) released several long-awaited proposed regulations implementing private insurance market reforms relating to essential health benefits (EHB), actuarial value, fair insurance premiums and employer wellness programs. 

Health Reform in Your Backyard: A Webinar Series for Consumer Advocates

Health Reform in Your Backyard: A Webinar Series for Consumer Advocates
The American Plasma Users Coalition (A-PLUS)  is a coalition of national patient advocacy  organizations, including the National Hemophilia Foundation, created to represent the unique needs of more than 170,000 patients with rare diseases who use life-saving plasma protein therapies.

Government Eases Eligibility Requirement for Children in PCIP

Government Eases Eligibility Requirement for Children in PCIP
To address concerns that insurance companies were ceasing to offer child-only individual insurance plans, rather than be forced to guarantee issue to children with pre-existing conditions, the government issued a policy guidance on February 17 reaffirming that children under the age of 19 would be eligible for the government-sponsored Pre-existing Condition Insurance Plan (PCIP).

NHF Comments on Insurance Regulations

NHF Comments on Insurance Regulations
In August, the National Hemophilia Foundation, a member of the American Plasma Users, A-PLUS, Coalition, and in cooperation with the National Organization of Rare Diseases, submitted comments to the Office of Consumer Information and Insurance Oversight, a branch of the U.S. Department of Health and Human Services responsible for ensuring compliance with the new healthcare reform laws.

Federal Advocacy Update

Federal Advocacy Update
The January 19th win of the Massachusetts senate seat, previously held by the late Ted Kennedy, by Senator-Elect Scott Brown has given Senate Republicans their 41st member, which is enough to sustain a filibuster.  This has imperiled the final passage of comprehensive health reform in 2010.
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