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Access to Care

Medicare, Medicaid, the Affordable Care Act are all priority issues that regulate access to care for patients with chronic illness.

The Chronic Disease Coalition works tirelessly to protect and expand access to care for chronic disease patients. We participate in coalitions at the state and federal level to prevent constant threats from impacting availability and affordability of health care, we educate lawmakers and decision-makers, and we empower patients to lift strong voices in support of quality health care for everyone.

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Access to telemedicine is a valuable tool for supporting patients with chronic disease, who may be immunocompromised or have difficulty leaving their homes.

The pandemic underscored the value for chronic disease patients of accessing health care services online. However, in some cases insurance companies are fighting to limit access to telehealth, saying it increases costs as more patients have access to care. 

Others challenge the fairness of telehealth, pointing out that people without access to broadband Internet, including those in rural settings or without access to wi-fi, are not able to participate in services. New laws are being enacted across the nation to protect access to this care and promote broadband services. 

The Chronic Disease Coalition is a strong supporter of these new laws and regularly testifies in favor of them. We also work with patients to tell their stories about how telehealth has been a lifeline. Read our telehealth blog here.

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Step Therapy, Non-Medical Switching, and Fail First Policies

Insurance companies often force patients to use cheaper treatments that have not been prescribed by a doctor in order to cut costs, with dangerous implications.

The Chronic Disease Coalition opposes policies that allow insurance companies to make treatment decisions for a patient, rather than a doctor. Patients across the country have important stories to tell about how these practices have delayed improvement in their conditions, or destabilized them once a treatment was working. 

We support legislation at the Congressional and state level that would ban these practices, and support patients to tell decision-makers their powerful stories about the negative effects of step therapy, non-medical switching and fail first policies. Read our recent step therapy blog here.

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Copay Accumulator Programs

Insurance companies will take all the revenue from copay assistance, but then require patients to personally pay their deductibles and out-of-pocket maximums, eliminating the role of copay assistance.

In recent years, insurance companies have instituted a new tactic for maximizing profits called copay accumulator programs or accumulator adjustment programs. These programs are often adopted with limited warning to patients but can have devasting effects to health and finances. 

Here’s how they work: A patient is prescribed a drug treatment by their doctor and receives a copay card to help cover the cost — often the card will help cover a patient’s deductible and out-of-pocket maximums. At the pharmacy, the patient uses the copay card to purchase the treatment. But if a copay accumulator has been added to the patient’s policy by the insurance company, the copay card won’t actually help the patient at all. The insurance company will simply collect all the revenue from the card, and then hold the patient personally responsible for the cost of their deductible and out-of-pocket maximums.
This often comes as a surprise to patients, who are told they must now pay for the treatment themselves or stop accessing it. This forces patients to decide between paying for their treatment and paying for food, internet, transportation and more. Patients who cannot afford the drug stop taking it, destabilizing their condition. This often leads to worsening health and additional medical costs. Patients who choose to personally pay for their medication because it is critical to their health are then faced with thousands of dollars in unexpected bills. 

The Chronic Disease Coalition strongly opposes copay accumulator programs. We encourage patients with stories to tell about the impacts of them programs to reach out to us, so that together we can end this harmful practice. Learn more about copay accumulators on our blog.

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Premium Assistance Bans

Insurance companies target patients with chronic diseases by rejecting their premium payments if they rely on financial aid from nonprofit organizations.

Chronic disease patients face high costs for treatment but are disproportionately from financially disadvantaged populations and often unable to work because of their medical condition. To ensure patients have access to care, charitable organizations will provide support for patients to pay their insurance premiums. 

This help is crucial but is often under attack by insurance companies and regulations that restrict access to premium assistance. The Chronic Disease Coalition opposes premium assistance bans and is active in Congressional and state legislation to ensure patients are permitted to access to this charitable assistance.

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Drug Price Tiers

Insurers put different types of drugs in different tiers with each tier requiring patients to pay more money. Tiers can change with little or no warning, financially harming patients.

On the surface, drug pricing tiers seem fair — patients are expected to pay a higher copay if their drug is more expensive. In reality, studies have shown that insurance companies rig drug pricing tiers to maximize profits, even when drugs become available at lower prices. 

Learn more in this 2019 study of manipulation in drug pricing tiers. It’s important that insurance companies charge patients fairly for drugs, and when appropriate the Chronic Disease Coalition weighs in on the issues through generating media attention and supporting patients to tell their stories of the impacts of unfair drug price tiers.

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Limited Networks

Health insurance companies make it more difficult to obtain needed care by limiting providers serving patients with chronic diseases.

Chronic illnesses are costly, for both patients and insurance companies. To limit their exposure to costs, insurance companies and Medicare may structure plans to limit a patient’s access to in-network support for their chronic condition. This can include limited access to specialists or treatment facilities. The Chronic Disease Coalition monitors insurance regulations and weighs in wherever discrimination occurs.

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Discrimination at Work

It is illegal to discriminate against people with chronic illnesses in hiring, firing, duties, advancement or demotions.

Laws like the Family and Medical Leave Act, the Americans with Disabilities Act and the Affordable Care Act include provisions for preventing discrimination against employees with chronic illness. 

Still, these incidents do occur, in part because employers may pay higher rates for health care if employees have chronic conditions. The Chronic Disease Coalition is a champion of laws that prevent discrimination. We partner with patients and other advocacy organizations to make sure these laws remain strong.

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Discrimination at School

The Center for Disease Control estimates that 25 percent of children have a chronic condition. Laws protect them from discrimination in schools.

Youth are experiencing chronic disease at higher rates than ever before including asthma, diabetes, obesity and allergies. These conditions can lead to missed school time and reduced opportunities for learning. Section 504 of the Rehabilitation Act of 1973 and Title II of the Civil Rights Act ensure that students are entitled to an education that accommodates their illness. The Chronic Disease Coalition supports these laws. Learn more about managing chronic illness at school.