Legislation and Public Policy | Caregiver Action Network

Legislation and Public Policy

CAN advocates on dozens of public policy issues that affect family caregivers. We advocate at both the Federal and State levels. We advocate both on legislation and regulations.Below are some highlights of CAN’s policy positions. For copies of CAN policy statements, position letters, or CAN’s position on issues not listed here, contact us.

Our Values:

Medicare Coverage is Critical to Family Caregivers: Family caregivers’ top priority is to ensure that their loved ones have access to all tools and therapies they need. Limiting the type of patients who may benefit from a certain type of treatment, diagnostic tool, or therapy, means that many others will not have access. For patients and their family caregivers, “Coverage with Evidence Development (CED)” for an FDA-approved drug often seems duplicative, leads to confusion, and undermines confidence in the FDA approval process. Click here to download CAN’s explanation of how CED hinders patient access & increases the burden on family caregivers.

Accelerated Approval: The current Accelerated Approval Program has been extremely successful in getting life-saving new medications to patients. The accelerated approval pathway has helped speed the availability of treatments for patients with serious or life-threatening diseases such as advanced cancers, rare diseases and HIV/AIDS while preserving the FDA’s high standards for safety and effectiveness. As family caregivers, our highest priority is the well-being of our loved ones. We oppose any legislation that would undermine the ability of our critically ill loved ones to get access to new life-saving treatments.

Access to Prescription Drugs: Prescription drugs can be extremely costly, especially for patients who have a high-deductible health insurance plan. CAN believes that policies should be passed that push health insurers to pass on rebates to help lower the cost of prescription drugs for patients and caregivers. CAN also calls for annual caps on the out-of-pocket expenses that patients have to pay for.

Caregivers Being Included in Patient Records: Caregivers need to be able to access medical information and patient records so they can better care for a loved one. HIPPA allows for this to happen and CAN wants to make sure that medical professionals and medical institutions make asking patients about allowing caregivers to access said records the norm.

CMS’ Decision Regarding Monoclonal Antibodies Directed Against Amyloid for Treatment of Alzheimer’s Disease: Representing family caregivers of loved ones with Alzheimer’s disease, CAN strongly opposes CMS’ decision to include Coverage with Evidence Development (CED) for potential life-changing Alzheimer's drugs. We believe that the CED will deny Medicare beneficiaries access to a ground-breaking therapy where there are no alternatives. This goes against our mission to be able to provide caregivers and their loved ones with access to new treatments. We also believe that The CED undermines the FDA approval process as the CMS has never before refused to cover an FDA-approved drug based on its on-label use, nor denied coverage of an entire class of drugs based on the safety and efficacy profile of one FDA-approved drug.

Government Negotiation of Drug Pricing: Caregiver Action Network believes that drug-pricing measures in the Build Back Better Act would have a chilling impact on the development of new medicines. The proposal hinges on lifting the non-interference clause in Medicare Part D, which has proven to be a critical safeguard to ensuring that seniors can access the medicines they need. By removing this critical safeguard -- and thus enabling government price setting -- Americans could lose access to important medicines.

Hearing Aids: Our goal is to support caregivers and reduce their stress. We welcome the opportunity for hearing devices to become more accessible for those who need them and face financial burden. However, we must also consider the health and safety of those who utilize the over-the-counter devices. A new FDA rule would allow an output limit of 115 to 120 dB, which is considerably higher than the level recommended by the World Health Organization. This is a level that, according to experts, can cause pain and injury to one’s hearing and induce further hearing loss. CAN appreciates that the FDA is taking steps towards making hearing aids more accessible, but wants the rule to adopt the standards advised by the nation’s experts.

In-Home Care Services: As most caregivers know, they may need the additional help of in-home care services for their loved ones. CAN believes that policies should be set that allow caregivers to use assets such as insurance policies and Health Service Accounts to cover the costs of in-home care. CAN supports requirements for home health agencies to: ensure that patients and their caregiver(s) receive written information about upcoming visits, medication instructions, treatments administered, and the name and contact information for home health agency clinical managers; provide each patient and their caregiver(s) with ongoing education and training, as appropriate, regarding the care and services identified in the plan of care; and coordinate all services provided by the physicians, nurses and therapists involved in the patient’s care.

Medicaid: If a loved one is covered by Medicaid, there is a program called CDPAP (Consumer Directed Personal Assistance Program) that gives an allowance that can pay a family member as the caregiver. CAN believes that we should protect this program so caregivers can continue to receive the financial support they need to provide care for their loved ones. CAN also strongly advocates for increased funding for Home and Community Based Services which allow people to stay at home longer before they need a nursing home.

Medicare Part B Reimbursement: Medicare Part B is a reimbursement program that covers medical care and prescriptions administered in outpatient settings such as doctors’ offices. For certain conditions, this is a extremely important and life-saving system. CAN opposes attempts to move medication from Part B to Part D where both access and affordability could be at risk.

Medicare Part D: Medicare Part D is a prescription drug coverage that can be added to the original Medicare plan. Many caregivers know that prescription and out-of-pocket costs for a loved one they are caring for can be very expensive. CAN believes that policies that protect seniors' ability to access essential medicine and encourage healthcare professionals to allow caregivers in the patients' insurance discussions are essential. CAN also calls for annual caps on the out-of-pocket expenses that patients have to pay for.

Non-Medical Switching: Non-medical switching is the practice of changing a patient’s prescription for any reason beyond the patient’s health and safety. This can be very dangerous for patients with rare or hard-to-diagnose health complications. CAN believes that regulations should be set in place at both the federal and state levels to prevent non-medical switching unless approved by the patient's doctor, the patient, and caregiver.

Nursing Home Issues: While a loved one may ultimately wind-up needing nursing home care. CAN realizes this does not end the responsibility of a family caregiver and caregivers can have trouble adjusting to this change. CAN believes in policies that recognize family caregivers’ responsibility to continue support after a loved one is moved into a nursing home.

Tax Policies That Help Caregivers: Caregivers spend much of their time and income caring for loved ones. CAN believes that a tax credit should be put in place to recognize this fact. As of right now, the income tax system recognizes the need to offset expenses for people with dependents. We believe that this should extend to caregivers as well.

Recent Laws Affecting Caregiving

American Rescue Plan Act of 2021 (H.R.1319):  Introduced by Rep. Yarmuth, John A. (D-KY-3) While this bill covers a lot of ground, it provides additional FY2021 funding for programs that provide nutrition, health promotion, and other services for older adults and caregivers. It focuses on families in which the primary caregiver is 55 years or older or the child has one or more disabilities.

Strengthening and Amplifying Vaccination Efforts to Locally Immunize All Veterans and Every Spouse Act (H.R.1276): Introduced by Rep. Takano, Mark (D-CA-41). This bill authorizes the Department of Veterans Affairs (VA) to furnish a COVID-19 (i.e., coronavirus disease 2019) vaccine to covered individuals during the COVID-19 public health emergency. Under this bill, family caregivers of veterans who are participating in the VA's Program of Comprehensive Assistance for Family Caregivers, caregivers of veterans participating in the VA's Program of General Caregiver Support Services, and caregivers of veterans participating in the VA's Medical Foster Home Program, Bowel and Bladder Program, Home Based Primary Care Program, or Veteran Directed Care Program are included. It also specifies that caregivers accompanying such prioritized veterans must also be prioritized.

Caregiving Bills in the 117th Congress

Alzheimer’s Caregiver Support Act (S.56) Introduced by Sen. Klobuchar, Amy (D-MN). This bill authorizes the Department of Health and Human Services to award grants to public and nonprofit private health care providers to expand training and support services for families and caregivers of individuals living with Alzheimer’s disease or a related dementia.

Care for the Veteran Caregiver Act (H.R.110): Introduced by Rep. Hudson, Richard (R-NC-8). This bill updates the Program of Comprehensive Assistance for Family Caregivers of the Department of Veterans Affairs (VA), including by requiring the VA to continue to provide assistance to a family caregiver for at least six months after the death of a veteran participating in the program. Additionally, the bill requires the VA to establish a process by which veterans who are determined to have the most significant need for caregiver assistance are permanently eligible for such assistance. The bill requires the VA to standardize the criteria used across all facilities in its required evaluations of the needs of the veterans and the skills of the family caregiver.

Elizabeth Dole Home and Community Based Services for Veterans and Caregivers Act of 2022 (H.R. 6823) Introduced by Rep. Julia Brownley (D-CA-26). This legislation would improve and expand home and community-based services for disabled and elderly veterans, ensuring they are able to remain in their homes and receive the care they need.

Expanding Access to Retirement Savings for Caregivers Act (H.R.3644) Introduced by Rep. Walorski, Jackie (R-IN-2). This bill allows an individual to make annual catch-up contributions to a retirement account before reaching age 50 if the individual leaves the workforce to provide dependent cares services. Specifically, the individual must have been unemployed, and have had no earned income, as a result of providing care to (1) a dependent under the age of 13, or (2) a spouse physically or mentally incapable of self-care.

Social Security Caregiver Credit Act of 2021 (H.R.3632) Introduced by Rep Schneider, Bradley Scott (D-IL-10) This bill credits certain Individuals who provide at least 80 hours of care per month to dependent relatives without monetary compensation with up to five years of deemed wages (determined by a specific formula) for the purpose of determining their Social Security benefit amounts. However, if an individual is otherwise entitled to a larger benefit amount, this provision shall not apply.

S.O.S. Veterans & Caregivers Act (H.R.6596): Introduced by Rep. Ruiz, Raul (D-CA-36). This bill expands eligibility for assistance under the Department of Veterans Affairs Program of Comprehensive Assistance for Family Caregivers. Specifically, the bill expands eligibility for such assistance to caregivers of veterans who have a serious illness that was incurred or aggravated during active military, naval, or air service. Under current law, such assistance is already provided to caregivers of veterans who sustained serious injuries in the course of their military, naval, or air service. The bill also requires the provision of an annual multidimensional assessment to measure burdens felt by family caregivers who are designated as the primary providers of personal care services to such veterans.