PETITION OVERVIEW

The petition calls for legislative action, specifically the creation of The ACCESS Act (Assuring Comprehensive Care and Essential Specialty Services) to address the pressing challenges faced by patients with complex and/or rare diseases on medi-cal in California.
These patients often struggle to access specialized care due to county restrictions and managed care plan limitations, leading to fragmented healthcare and compromised outcomes. The proposed legislation seeks to create exemptions within the healthcare system, allowing patients to receive comprehensive care from their designated specialists regardless of county boundaries.
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PETITION OVERVIEW

The petition calls for legislative action, specifically the creation of The ACCESS Act (Assuring Comprehensive Care and Essential Specialty Services) to address the pressing challenges faced by patients with complex and/or rare diseases on medi-cal in California.
These patients often struggle to access specialized care due to county restrictions and managed care plan limitations, leading to fragmented healthcare and compromised outcomes. The proposed legislation seeks to create exemptions within the healthcare system, allowing patients to receive comprehensive care from their designated specialists regardless of county boundaries.
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BACKGROUND

The journey to diagnosis for individuals with complex and diagnosed rare diseases is often fraught with challenges. Accessing specialized healthcare, particularly from specialists who are usually not local but based in universities or research facilities, poses a significant hurdle. Many patients find themselves unable to work due to their conditions, leading them to rely on California’s Medi-Cal program for healthcare coverage. 
Previously, patients could file exemptions to stay on Direct Medical, allowing them to see any physician in California. However, the implementation of Cal-AIM is transitioning many counties into single-plan counties, eliminating the option for exemptions and leaving patients without a means to advocate for their care or access their specialists adequately.

THE PROBLEM

Patients are facing limited options for accessing specialized care under the current system. With the shift to single-plan counties and the elimination of exemption options, individuals are left with two choices: seeing non-specialist doctors within their county or requesting continuity of care. Continuity of care, while intended to allow patients to see specialists within managed care plans, presents its own challenges. Approval is contingent on specialists actively investigating the patient’s condition, excluding those who are managing it. Even if approved, patients can only visit their specialist for appointments, with specialized testing, labs, surgeries, or hospitalizations requiring navigating multiple hospital systems and insurance plans. This fragmented approach to care can be detrimental to patients’ health and well-being, adding stress to an already challenging situation.

THE NEED FOR A SOLUTION

There is an urgent need for legislative intervention to address the barriers preventing patients from accessing specialized care. Patients should not have to navigate multiple hospital systems or risk fragmented care due to bureaucratic hurdles. It is essential to create a system that ensures patients have access to their specialists and comprehensive care within their specialist’s hospital, regardless of county boundaries or managed care plan restrictions.

THE SOLUTION

Legislative action is necessary to provide patients with the access they need to specialized care. Creating exemptions for patients with complex, diagnosed rare diseases would allow them to see their specialists and receive all necessary testing, treatments, and support within their specialist’s hospital. This solution would streamline the healthcare process, ensuring patients receive adequate care without the burden of navigating multiple systems or facing limitations on their treatment options.

THE LEGISLATION PROPOSAL

The legislation proposed, The ACCESS Act (Assuring Comprehensive Care and Essential Specialty Services) aims to create exemptions within the healthcare system that allow these patients to access specialized care from their designated specialists, regardless of county boundaries or managed care plan restrictions. By establishing these exemptions, the legislation seeks to ensure that patients can receive comprehensive testing, treatments, and support within the hospital where their specialist practices. Additionally, the legislation aims to streamline the healthcare process for these patients, reducing the burden of navigating multiple healthcare systems and improving coordination of care. Ultimately, the legislation is intended to enhance healthcare access and outcomes for individuals with complex, diagnosed rare diseases, ensuring they receive the specialized care they need to manage their conditions effectively.
The proposed legislation would address the following issues:
• Creation of exemptions for patients with complex and/or rare diseases.
• Ensuring access to specialists and comprehensive care within the specialist’s hospital.
• Elimination of bureaucratic barriers preventing patients from receiving necessary testing, treatments, and support.
• Streamlining the healthcare process and reducing the risk of fragmented care for patients.

WHY IT'S IMPORTANT TO SIGN

Signing this petition is crucial for advocating for patients’ rights to access specialized care. By supporting this legislation, individuals can contribute to improving healthcare access for those with complex, diagnosed rare diseases. Every signature counts in urging legislators to prioritize this issue and enact meaningful change that benefits patients statewide.

WHAT WE ARE GOING TO DO WITH THIS PETITION

This petition will be utilized as a powerful advocacy tool to garner support for the proposed legislation. Signatures collected will be presented to legislators, demonstrating the widespread public demand for action on this issue. Additionally, the petition will be used in conjunction with our bill proposal to mobilize grassroots efforts, engage stakeholders, and advocate for legislative change that prioritizes patients’ healthcare needs.

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