We Deserve Better: A Call for Coordinated, Patient-Centered Chronic Healthcare

To: Dr. Mehmet Oz, Administrator of the Centers for Medicare & Medicaid Services (CMS); Abe Sutton, Director of the Center for Medicare and Medicaid Innovation (CMMI); the HHS/CMS Healthcare Advisory Committee; and federal and state healthcare policymakers.

Why we are calling for change

Living with chronic illness is difficult enough. Navigating a fragmented healthcare system should not make it harder.

People living with complex and chronic conditions are routinely expected to coordinate their own care across multiple specialists, manage conflicting treatment recommendations, chase referrals, follow up on test results, and determine which provider is responsible for their ongoing treatment.

Primary care providers may be unable or unwilling to manage complex conditions, while specialists focus on individual aspects of a patient's health. Patients are left caught in the middle, with no clear person responsible for their overall care.

For people with invisible, fluctuating, rare, or poorly understood conditions, another barrier exists: physical symptoms may be attributed to anxiety or other psychological causes before appropriate medical explanations have been adequately considered.

Mental health care is important and should be accessible to everyone who needs it. However, a psychiatric referral should not substitute for appropriate medical evaluation, and a history of anxiety or depression should never automatically discredit a patient's physical symptoms.

Patients should not have to become their own case managers, medical researchers, and advocates simply to receive appropriate care.

We are calling for a healthcare system that communicates, investigates, follows through, and treats patients as partners in their care.

What we are asking CMS, HHS, and policymakers to do

We call on CMS Administrator Dr. Mehmet Oz, CMMI Director Abe Sutton, the HHS/CMS Healthcare Advisory Committee, and other relevant decision-makers to consider and advance the following reforms within their respective authorities.

1. Expand access to affordable care coordination

Build on existing Medicare Chronic Care Management services and explore ways to expand effective care coordination models across eligible populations and healthcare programs.

People with multiple chronic conditions should have access to a designated clinician or care team who can help coordinate treatment plans, communicate between providers, and ensure appropriate follow-up.

Access to coordination should not depend solely on a patient's income, ability to pay privately, or capacity to navigate a complicated healthcare system independently.

2. Establish clear responsibility between primary care and specialists

Develop standards and incentives that encourage healthcare providers to establish who is responsible for ongoing condition management, medication oversight, referrals, test-result follow-up, and communication about changes in a patient's condition.

Patients should not be repeatedly told that their care is someone else's responsibility or left to resolve conflicting treatment plans on their own.

3. Promote appropriate evaluation of physical symptoms

Advance evidence-based clinical standards that encourage appropriate consideration of medical explanations before physical symptoms are attributed primarily to psychological causes.

When symptoms remain unexplained, persist, or change, patients should have a reasonable plan for reassessment and follow-up. Clinical decisions should reflect the available evidence and the patient's individual circumstances.

Mental health referrals should remain available when clinically appropriate, but they must not be used to dismiss physical symptoms, replace a reasonable medical evaluation, or abandon patients who have not yet received answers.

4. Improve communication and continuity of care

Promote secure information-sharing between providers, including relevant medical histories, medications, test results, specialist recommendations, and documented treatment plans.

Patients should not have to repeatedly reconstruct their medical histories or serve as the sole communication link between disconnected medical offices.

5. Make coordinated care financially accessible

Explore coverage policies, reimbursement structures, and innovative payment models that support the time and resources needed for meaningful coordination between providers.

Care coordination should be treated as an essential part of managing complex chronic illness, not an optional service available only to patients who can afford additional assistance.

6. Measure outcomes and include patient voices

Develop measurable indicators of care coordination, timely follow-up, continuity, and patient experience. Include people living with chronic illness, disability advocates, caregivers, and healthcare professionals in designing and evaluating reforms.

Patients should have accessible ways to raise concerns when care is fragmented, symptoms are repeatedly dismissed, or necessary follow-up fails.

Why these changes matter

When healthcare providers do not communicate, important information can be missed. When responsibility is unclear, follow-up can fall through the cracks. When physical symptoms are prematurely attributed to psychological causes, appropriate evaluation may be delayed.

The consequences can extend beyond health. Patients may lose income, employment, independence, and trust in a system that is supposed to help them.

We recognize that healthcare professionals face staffing shortages, time constraints, administrative burdens, and insurance restrictions. This campaign is not about blaming individual clinicians. It is about advocating for a system that supports providers in delivering coordinated care while establishing clear expectations for patient-centered treatment.

Existing Medicare Chronic Care Management coverage demonstrates that care coordination can be incorporated into healthcare delivery. We are asking decision-makers to examine how those services and other effective models can be expanded, improved, and made more accessible. We are also asking healthcare leaders to address the barriers that prevent patients with complex conditions from receiving appropriate, continuous care.

Our specific request

We ask CMS and HHS to bring these concerns into their policy development and advisory processes, engage directly with patients and healthcare professionals, and identify practical policy changes that can:

- Expand access to affordable care coordination.

- Clarify responsibility and improve communication between primary care and specialists.

- Promote appropriate, evidence-based evaluation of physical symptoms.

- Improve follow-up, continuity, and accountability across healthcare settings.

- Measure whether these changes improve patients' access to care and experience of the healthcare system.

We ask CMMI to consider opportunities to test and evaluate care delivery and payment models that support these goals within its statutory authority. We ask the Healthcare Advisory Committee to consider these patient experiences and recommend actionable improvements to federal healthcare leadership.

We also call on Congress, state governments, insurance regulators, and healthcare organizations to pursue complementary reforms where broader authority or legislation is needed.

Our message to decision-makers

We should not have to get sicker to be taken seriously.

We should not have to fight every specialist separately to receive comprehensive care.

We should not have to choose between managing our health, keeping our jobs, and paying our bills because the healthcare system expects us to coordinate everything ourselves.

We deserve healthcare that listens. Healthcare that communicates. Healthcare that investigates. Healthcare that follows through.

We are asking decision-makers to work with us to build a system where people living with chronic illness are not left behind by fragmented care or dismissed before their symptoms have been appropriately evaluated.

Our experiences deserve to inform policy. Our voices deserve to be heard. And our healthcare system can do better.

Sign this petition to demand coordinated, accessible, patient-centered healthcare for people living with chronic illness.