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Advocacy Priorities

Color of Crohn’s & Chronic Illness advocates on behalf of BIPOC IBD, digestive disease, and chronic illness patients, caregivers, and healthcare providers.
Consistent with our mission, we are asking Congress, the Administration, and state legislatures to support health equity, research for BIPOC patients that lead to cures, and to improve patient access to care. Learn more about our legislative priorities below. 
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Health Equity / Health Disparities

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ADVOCATING FOR HEALTH EQUITY / ADDRESSING HEALTH DISPARITIES IN IBD AND RELATED CHRONIC ILLNESS

An important part of the Foundation’s advocacy work is making our voices heard. Building relationships with legislators at the state and federal levels is essential to achieving our legislative priorities.

Our advocates are patients, caregivers, supporters, researchers, and healthcare providers. By sharing their stories, they ensure that the voices of those affected by IBD are heard.

We need your voice.

Start making a difference today so that we can continue to improve the quality of life for IBD patients and improve access to care and research funding. Become an advocate by joining our Advocacy Network!

HEAA builds on the advancements of the Affordable Care Act ( ACA), which provided the most significant legislative advancement for the health of communities of color in the last 40 years,  by providing federal resources, policies, and infrastructure to eliminate health disparities in all populations, including racial and ethnic minorities, immigration status, age, ability, sex, sexual orientation, gender identity, and English proficiency. Within its ten titles HEAA addresses a wide spectrum of health equity concerns, including: data collection and reporting; culturally and linguistically appropriate health care; health workforce diversity; healthcare services; outcomes for women, children and families; mental health; high-impact minority diseases; health information technology, accountability and evaluation; and social determinants and environmental justice. The most recent version of HEAA has been comprehensively updated to reflect the latest, most comprehensive legislative approaches to achieving health equity.
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Access to care / Utilization

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In the interest of supporting high-value, high-quality care, COCCI supports policies that promote full access to the most appropriate  drug regimens at the most appropriate time for patients with IBD and related illness. We understand and share concerns about cost and support efforts to ensure appropriate use of IBD therapies. Any strategies to address cost, however, must first protect patient access to the most appropriate therapy for treatment of their disease, as determined by their physician.

An important part of the Foundation’s advocacy work is making our voices heard. Building relationships with legislators at the state and federal levels is essential to achieving our legislative priorities.

Through direct advocacy at the federal and state level, as well as participation in numerous working groups and coalitions, COCCI is focused on ensuring patient centered care by eliminating access to treatment barriers and reducing burdensome utilization management techniques such as: 
 

  • CoPay Accumulator Programs

  • Step Therapy

  • Non-Medical Switching

  • Prior Authorization

  • Protect Minorities From Descrimination

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COCCI advocates for Congressional funding of IBD related programming at the CDC’s National Center for Chronic Disease Prevention and Health Promotion. Specifically, COCCI commends Congress and the CDC in investing in research on the epidemiology of IBD, as well as on disparities in treatment patterns and overall health outcomes within minority populations and underserved communities. COCCI will support CDC activities to promote this research and to develop a plan to reduce the time for persons from underserved communities to receive a diagnosis, including by increasing understanding and awareness of IBD among these populations and the healthcare providers that serve them.

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CDC National Center for

Chronic Disease Prevention and Health Promotion / IBD

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Medical Nutrition Therapy

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Color of Crohn’s and Chronic Illness  is a member  of the Patients & Providers for Medical Nutrition Equity Coalition
(see www.medicalnutritionequityfor.us ) and advocates in the U.S. Congress for the passage of the Medical Nutrition Equity Act.  Medical nutrition is an important treatment option for patients with IBD related digestive diseases.  Currently, insurance coverage for medically necessary food varies widely, and many people do not have coverage. The coalition has been meeting with members of Congress to ask that they co-sponsor this important legislation  which would provide public and private insurance coverage for medically necessary foods (including vitamins) for digestive and inherited metabolic disorders. Medically necessary foods, which are required to prevent severe disabilities and death,  would be covered under Medicaid, the Children’s Health Insurance Program (CHIP) , Medicare,  the Federal Employee Health Benefit Program (FEHBP ) , and private insurance if they are prescribed by the patient’s provider. The legislation is narrowly drafted to ensure that it only covers patients for whom the physician- ordered medical nutrition constitutes the treatment. 
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Celiac disease afflicts millions of Americans, most of whom are undiagnosed, and is second only to end-stage renal disease in perceived burden by patients and caregivers.

 

Celiac disease and Crohn’s disease are both diseases that deal with inflammation of the intestines. Studies debate the extent of the connection between Crohn’s disease and celiac disease, but all conclude that Crohn’s is more common in those with celiac disease than in the general population.

 

COCCI is committed to working with its colleagues in the celiac disease community to advocate for increased federal funding for celiac disease research with an emphasis on the connection between Crohn’s disease and celiac disease, labeling standards for gluten free foods, widespread patient and provider education in celiac disease access to mainstream gluten-free products, improved diagnostic tools, and accelerated development of therapeutic treatments and a cure for celiac disease. 

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Celiac Disease & Crohn's Disease

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Diversity in Clinical Trials

What is a clinical trial?

Clinical trials are research studies that determine whether medical products like medicines, vaccines, or devices are safe and effective. These studies may show which medical approaches work best for certain illnesses or groups of people.

4 things you should know

about clinical trials

Clinical trials are research studies conducted with people—they are designed to answer specific research questions about medical products or procedures. Researchers must follow detailed protocols and the FDA’s safety guidelines to make each trial as safe as possible.

Participation is always voluntary—and you can leave a study whenever you want.

Clinical trials often need healthy volunteers to help answer their research questions.

Clinical trials are research studies conducted with people—they are designed to answer specific research questions about medical products or procedures. Researchers must follow detailed protocols and the FDA’s safety guidelines to make each trial as safe as possible.

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The importance of minority

participation in clinical trials

Participants in clinical trials should represent the patients that will use the medical products. This is often not the case--racial and ethnic minorities are underrepresented in clinical research. :

This is a concern because people of different ages, races, and ethnicities, may react differently to medical products. We are committed to working with companies to change this. Joining a clinical trial might be a good choice for you if:

  • You and your doctor believe current treatments aren’t good options and a clinical trial offers additional alternatives.
     
  • You want to help ensure that the benefits and risks of new medical products are studied in the range of patients likely to need them.
     
  • You want to help researchers find better ways to fight diseases.
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Increasing diversity in clinical trials: What can doctors, regulators, and patients do?

Most clinical trials do not score highly on the diversity front. In this Special Feature, we explore who takes part in clinical trials, what barriers prevent others from doing so, and what patients, doctors, and those involved in drug approvals can do to improve on this.

Many diseases lack effective treatments, and many researchers worldwide are trying to address these unmet needs.

Clinical trials form the cornerstone of new drug approvals, and without the volunteers who participate in clinical trials, this process would not be possible.

Yet, clinical trials overwhelmingly fail to represent the demographic diversity of the populations that the drugs in development aim to serve.