Resources

Reconciliation Sign On Letter Outlining the Importance of Input and Nondiscrimination

08.04.22

Letter signed by over 40 advocacy organizations calls on Congress to ensure HHS establishes a decision-making process that is informed by meaningful input from patients and other affected stakeholders related to the legislation’s negotiation process, including any process the Secretary uses for determining the “fair price” for selected drugs under Medicare in instances when evidence of a drug’s value is being considered.  The letter also urges Congress to recognize and communicate to HHS that current safeguards against devaluing the lives of individuals with disabilities, older adults and other subpopulations experiencing health disparities, as well as protections regarding the use of comparative clinical effectiveness research in Medicare, under the existing provisions of Section 1182 of the Affordable Care Act must be adhered to as part of the process of negotiation outlined in the legislation.

Letter to CA Assemblymember John Wood on requested amendments to AB1130

04.19.22

We understand that the rising cost of healthcare is a concerning issue that requires real solutions. As organizations representing patients and people with disabilities, the affordability of health care is a significant priority, and we look forward to working with state policymakers to manage health costs in a manner centered on meeting the health care needs of people with disabilities and chronic conditions. In doing so, we urge the state to avoid policies that would potentially discriminate by relying on inequitable metrics such as the Quality-Adjusted Life Year (QALY) that have detrimental implications for access to needed care and treatment by explicitly barring their use in health care decisions.

PIPC Submits Comments on ICER Assessment of COVID-19 Treatments

03.16.22

In a letter to the Institute for Clinical and Economic Review (ICER), the Partnership to Improve Patient Care (PIPC) offered feedback on ICER’s assessment of treatments for COVID-19. PIPC expressed disappointment in ICER’s model for failing to capture both the full societal benefits of COVID-19 treatments, as well as the impact these treatments have on health equity. The letter also criticizes ICER’s decision to rely on the discriminatory quality-adjusted-life-years (QALY) metric.

“The pandemic is also widely known to have exerted more harm on certain populations, including communities of color, people with disabilities, and individuals living with chronic illness,” wrote PIPC Chair Tony Coelho. “PIPC urges ICER to revisit its modeling choices to ensure it is capturing the full benefit of effective COVID-19 treatments on society, including health equity considerations.”

NCD Recommendation to Include a Comprehensive QALY Ban in BBB Supported by Law and Public Opinion

03.16.22

The National Council on Disability (NCD) has recommended an unambiguous ban on the quality adjusted life year (QALY) within the text of the Build Back Better Act (H.R. 5367), responding to their increasing reference in coverage, reimbursement and incentive programs. The Chairman of the National Council on Disability, Andrés Gallegos, stated, “In our most recent advice to Congress we advise that Congress extend those prohibitions [prohibitions against the use of the QALY in the ACA] throughout federal programs. The Build Back Better Act is a tremendous opportunity to do so and to memorialize the protections with an unambiguous ban on the use of the QALY. We remain hopeful that our advice will be heeded as we all await the final text of that bill.”

Click here to view the NCD’s letter.

Maryland legislature reintroduces the Maryland Nondiscrimination in Health Care Coverage Act

03.16.22

The Maryland legislature has reintroduced the Maryland Nondiscrimination in Health Care Coverage Act, proposing to bar the use of QALYs in state decision-making was reintroduced on February 17, 2022 as H.B. 903. The legislation did not include protections for patients and people with disabilities such as barring the use of discriminatory QALYs. The Board has begun meeting to hear from stakeholders, including hearing a presentation from the Institute for Clinical and Economic Review which relies on QALYs to assess treatment value. Legislation was introduced this year to bar the use of QALYs and implement patient protections that has not advanced in the legislature. On August 3, organizations representing patients and people with disabilities sent a letter urging the Board to avoid policies that would potentially discriminate by relying on discriminatory metrics such as QALYs. Click here to view legislation recently re-introduced in Maryland to bar the use of QALYs and implement patient protections.

For more state related information visit: www.patientaccessproject.org

Maine Considering Legislation that Would Import QALYs from Canada

03.16.22

Maine is currently considering LD 1636, which would import QALYs from Canada. The bill directly references the prices paid for drugs in five Canadian provinces. Testimony from advocates highlighted concerns that Canada references QALYs and the bill would thereby import the QALY into Maine’s Medicaid program. Before applying for coverage by the provinces, all drugs must complete a Common Drug Review by CADTH, which uses QALYs. In Canada, many individuals living with disabilities are unable to receive the treatments and care they need. The National Council on Disability (NCD) warned in its 2019 report that similar coverage denials and loss of access to care could also be the outcome if the United States if we reference other countries. The NCD also highlighted in its report that Section 504 of the Rehab Act and Section 1557 of the ACA also apply to Medicaid programs because they receive federal financial assistance. Click here to view the bill. Click here to view testimony from CancerCare. Click here to view testimony from Southern Maine Chronic Pain Support Group. Click here to view testimony from the Center for Community Inclusion & Disability Studies.

For more state related information visit: www.patientaccessproject.org

Massachusetts House and Senate Introduce Legislation Centered on Patients and People with Disabilities

03.16.22

The Massachusetts House and Senate have each taken the positive step of introducing An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with DisabilitiesH.201 and S.753. This bill would enshrine essential patient protections including a ban on the use of the QALY, a requirement for research to meet patient-centeredness criteria, and robust engagement of the patient and disability communities in health care decision making. Also, amendments were introduced to bar the use of QALYs as part of legislation S. 2651 to bar the use of QALYs that were withdrawn. Click here to view Amendment #20.

For more state related information visit: www.patientaccessproject.org

Washington State legislature has introduced SB 5532

03.16.22

The Washington State legislature has introduced SB 5532, a bill establishing a prescription drug affordability board. It does not prohibit the use of metrics such as quality-adjusted life years (QALYs) by the Board as part of its process for conducting an affordability review or in the process for determining which drugs will be made subject to an affordability review, with potential implications for a discriminatory impact in the treatments chosen for payment limits. As described by the National Association of State Health Policy, this legislation is modeled on Canada, which uses QALYs to determine coverage and reimbursement of health care treatments and services. The legislation does bar QALYs as part of the methodology for calculating the “upper payment limit” for drugs selected based on the affordability review. Click here to view the bill. Click here to comment on the bill.

For more state related information visit: www.patientaccessproject.org

Connecticut Introduced SB 260

03.16.22

Connecticut introduced SB 260, a bill creating a prescription drug affordability board. It does not prohibit the use of metrics such as quality-adjusted life years (QALYs) by the Board. As described by the National Association of State Health Policy, this legislation is modeled on Canada, which uses QALYs to determine coverage and reimbursement of health care treatments and services.

For more state related information visit: www.patientaccessproject.org 

Portland Business Journal publishes article on patient advocates pushing to overhaul Oregon Medicaid’s drug list

03.16.22

Recently, the Portland Business Journal published an article on how patient advocates are pushing to overhaul Oregon Medicaid’s drug list to ensure people with disabilities are not denied care. The article stated, “The U.S. Department of Health and Human Services in 1992 denied Oregon’s use of the “quality-adjusted life year” metric as discriminatory.” The article also highlighted that, “Disability rights advocates are pushing Oregon’s Medicaid program to change how it decides which treatments to cover in order to ensure that people with disabilities are not discriminated against and denied services. Oregon’s waiver application, submitted to CMS on February 18, 2022, did not request to continue the state’s EPSDT waiver or a closed formulary, both issues for which patient and disability advocates expressed opposition. The waiver did defend the state’s use of QALYs and continues to request authority to conduct reviews of drugs approved through FDA’s accelerated pathway to allow for restricted coverage. Click here to read the full article. For original letters on the state’s initial draft, click here to view the DRO letter and click here to view the letter from national disability rights organizations. Click here to view the letter from the Epilepsy Foundation. Click here to view the waiver application as submitted to CMS.

For more state related information visit: www.patientaccessproject.org

New Polling Results on the Use of Cost-Effective Assessments

11.23.21

In November, 2021, Morning Consult ran a poll, conducted biannually, on behalf of Partnership to Improve Patient Care, focusing on the use of cost-effectiveness assessments to determine the value of coverage and treatment costs. As in previous years, the survey found that Americans want patients and their doctors in charge of health care decision making and are opposed to the use of cost assessments such as Quality-Adjusted Life Year (QALY).

Today, PIPC Chairman Tony Coelho published an opinion piece in Morning Consult about the poll, stating, “Ten years after the Partnership to Improve Patient Care (PIPC) released its first public opinion survey, our latest poll released today underscores how vitally important it is for lawmakers to maintain and strengthen safeguards for patients and people with disabilities in all health care policies.” Chairman Coelho was heartened to see the National Council on Disability — an independent federal agency that advises Congress and the administration on disability policy — recently come out with targeted recommendations to strengthen BBBA by including meaningful protections against government use of discriminatory cost-effectiveness thresholds based on the quality-adjusted life year (QALY). He emphasized that this recommendation represents an important step in protecting patients and patients with disabilities.

MA Bill Explainer

11.23.21

As we look to control health care costs in Massachusetts, it is imperative that legislators approach this in a manner that does not discriminate against patients and people with disabilities. In order to do this, it is imperative that we have appropriate patient protections in place.

Press Release: Massachusetts Chapter and Epilepsy Foundation New England issue statement on H. 201

11.23.21

Boston, Massachusetts – We are pleased to see that H. 201, An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with Disabilities, will be receiving a hearing before the Joint Committee on Health Care Financing on Tuesday, November 9. We support policymakers’ goals to lower the cost of health care for residents of the Commonwealth, but as policymakers have sought solutions this issue, we have been concerned to see them considering policies that rely on the Quality-Adjusted Life Year (QALY), which discriminates against people with disabilities and chronic illnesses.

Organizations send letters to California Assembly member Wood and members of the Budget Committee calling for amendments to AB 1130 to preclude the use of QALYs by the proposed Office of Health Care Affordability

07.27.21

Over 20 organizations signed letters on July 21. 2021 to California Assembly member Wood and to the members of the Budget Committee calling for amendments to AB 1130 that would preclude the use of quality-adjusted life years (QALYs) by the proposed Office of Health Care Affordability. You can read the letter addressed to Assembly member Wood here, and the letter addressed to the Budget Committee here.

Why Referencing ICER’s UPI Report Is Dangerous

03.26.21

The Institute for Clinical and Economic Review (ICER) is an independent non-profit entity. ICER is not a federal government agency and not affiliated with the FDA, nor does it have any authority to approve or deny drug access. The legislation developed by the National Association of State Health Policy (NASHP) is unusual in that it would codify referencing a report from a non-governmental entity as the sole source of information, thereby
sidestepping usual state contracting processes that would allow for public comment and state government oversight of the report’s methods and conclusions. It would also preclude reference to evidence from other, more appropriate, entities, stating, “the state shall utilize and rely upon the analyses of Prescription Drugs prepared annually by the Institute for Clinical and Economic Review (ICER) and published in its annual Unsupported Price Increase Report.”

Patients and People with Disabilities Call For Representation And Patients Protections In Drug Review Boards and Commissions

03.22.21

Many states have or are considering adoption of a drug review board or commission. These boards have differing names from state to state but their goal is to allow the state to review and evaluate the reimbursement rate and/or coverage for pharmaceuticals. Most have fairly broad parameters of how they can assess a drug’s value, and specifically permit the state to rely on third-party research or contract directly with a third-party for
the purpose of fulfilling its duties. As has happened in other states such as New York and Massachusetts, without patient protections, these bills allow the new state board or commission to reference value assessments that rely on quality-adjusted life years (QALY) and similar metrics or
even to directly contract with entities such as the Institute for Clinical and Economic Review (ICER) that refer to QALYs as the “gold standard.”

Patients and People with Disabilities Oppose Referencing Canadian Policies

03.22.21

The quality-adjusted life year, or QALY, is a metric commonly used to determine the value of a health care treatment. To calculate a QALY, you must assign a value to a person’s life and to the incremental improvement in quality of life with treatment. The value assigned to seniors, the chronically ill, or people with disabilities is lower than that of a young, healthy person and does not capture how people living with a condition value quality of life improvements. Therefore, QALYs often lead policymakers and payers to conclude that treatments for seniors, patients with chronic conditions or people with disabilities are not worth it.

Legislative Template for State-Based Legislation: Advancing Health Care Research and Decision-Making Centered on Patients and People with Disabilities

02.22.21

Value Our Health calls on state legislators to protect patients and people with disabilities from policies that would reference discriminatory cost effectiveness analyses based on QALYs and similar metrics, or that would use QALY-based analyses as leverage to reduce government spending by limiting access through the use of step therapy, prior authorization, cost-sharing designs, and tiered formularies. Consideration of research and analysis for Medicaid policies impacting coverage, reimbursement and incentive programs should be transparent to the public and deliberated with input from patients and people with disabilities.

Oklahoma QALY Ban Support Statement

02.22.21

The American Association of People with Disabilities, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law, the Disability Rights Education and Defense Fund, the National Council on Independent Living, Progressive Independence, TARC, and The Arc of the United States applaud Oklahoma’s Governor Kevin Stitt for signing into law the Nondiscrimination in Health Care Coverage Act. This crucial legislation defends the equal dignity of people with disabilities by banning the use of the discriminatory Quality Adjusted Life Year (QALY) metric by state agencies and requiring the state to consult with disability organizations, including self-advocacy groups, prior to making decisions on coverage, reimbursement, and utilization management.

AAPD AUCD PIPC OK SB 734

02.22.21

As organizations representing people with disabilities, we are writing with regard to our concerns about legislation, S.B. 734, being considered in the State of Oklahoma that would import discriminatory pricing policies from Canada to the State of Oklahoma. The American Association of People with Disabilities (AAPD) is a national cross-disability rights organization, advocating for full civil rights for the over 56 million Americans with disabilities by promoting equal opportunity, economic power, independent living, and political participation. The Association of University Centers on Disabilities (AUCD) is a membership organization that supports and promotes a national network of university-based interdisciplinary programs. The Partnership to Improve Patient Care is a coalition at the forefront of applying principles of patient-centeredness to the nation’s health care system, including the translation of evidence into patient care in a manner that achieves value to the patient.

AAPD AUCD PIPC ND SB 2170

02.22.21

As background, the American Association of People with Disabilities (AAPD) is a national cross-disability rights organization, advocating for full civil rights for the over 61 million Americans with disabilities by promoting equal opportunity, economic power, independent living, and political participation. The Association of University Centers on Disabilities (AUCD) is a membership organization that supports and promotes a national network of university-based interdisciplinary programs. The Partnership to Improve Patient Care (PIPC) is a coalition effort to apply principles of patient-centeredness to the nation’s health care system. We encourage policymakers to manage health costs in a manner centered on meeting the health care needs of people with disabilities and chronic conditions.

Epilepsy Foundation WA letter SB 5020 – W&M Committee

02.18.21

The Epilepsy Foundation is the leading national voluntary health organization that speaks on behalf of at least 3.4 million Americans with epilepsy and seizures. We foster the wellbeing of children and adults affected by seizures through research programs, educational activities, advocacy, and direct services. Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. Approximately 1 in 26 Americans will
develop epilepsy at some point in their lifetime. For people living with epilepsy, timely access to appropriate, physician-directed care, including epilepsy medications, is a critical concern. Epilepsy medications are the most common and cost-effective treatment for controlling and/or reducing seizures. To delay, change, limit, or deny access to medications could be extremely dangerous.

Op-Ed: SB 5020 Includes Group Known for Discriminatory Practices

02.11.21

The cost of health care is high. Too high. There is discussion by federal and state lawmakers about policies to lower costs to protect patients and their families. I applaud the intent, but, as the parent of a child with cystic fibrosis (CF) and the leader of a patient advocacy organization, I believe they are missing the mark. The issue is simple. In developing these policies, policymakers are not talking to us, to learn what patients need and prioritize. Too often, they are laser focused on punishing pharmaceutical companies by relying on flawed discriminatory information that restricts access to needed treatments.

AAPD AUCD WA SB 5020 Testimony

02.08.21

On behalf of people with disabilities, the American Association of People with Disabilities and the American Association of University Centers on Disabilities are deeply concerned that Washington State Senate Bill SB 5020 explicitly references value assessments that are developed in reliance on the discriminatory quality-adjusted life (QALY) year metric. For 30 years, advocates in the disability community have advocated against the use of discriminatory metrics to assess the value of health care and how it will be covered and reimbursed in federal programs, including Medicaid.

Epilepsy Foundation WA Letter SB 5020

01.21.21

We are concerned that SB5020 relies on measures that discriminate against people with disabilities. Quality Adjusted Life Years (QALYs) are used by the Institute for Clinical and Economic Review (ICER), which is named in the bill, in their studies and determinations of whether price increases are supported by the evidence. QALYs have long been opposed by the disability community for discriminating against people with disabilities. QALYs place a number on the value on a year of human life, with relatively lower values for those with disabilities and chronic conditions. These values can then be used to deny access to care and treatments.

PIPC Testimony to WA State Legislature on SB 5020

01.21.21

On behalf of organizations representing health care stakeholders, submitted comments to express concern with SB 5020, as it relies directly on reports conducted by the Institute for Clinical and Economic Review (ICER), an entity that embraces the quality-adjusted life year (QALY) as the gold standard for value assessment. QALYs have long been opposed by the disability community for discriminating against people with disabilities. QALYs place a number on the value on a year of human life, with relatively lower values for those with disabilities and chronic conditions. These values can then be used to deny access to care and treatments.

Value – National Health Council

06.02.20

The U.S. health care system is undergoing a transformation in how it delivers and pays for care. As traditional fee-for-service gives way to value-based arrangements, understanding the “value” of health care has become a national priority. The National Health Council is focused on ensuring the voice of the patient and patient organizations are an integral part of the value discussion.

Innovation and Value Initiative

06.02.20

The nonprofit Innovation and Value Initiative (IVI) was created to raise the level of discussion regarding value in healthcare and find common ground in the approach to measuring value. The U.S health system is diverse, complex, and ripe for innovation. IVI brings together healthcare leaders from academia, patient advocacy organizations, payers, life sciences companies, providers, delivery systems, and patient communities to advance approaches to value that fit the American context.

H.R.3 – Elijah E. Cummings Lower Drug Costs Now Act

06.01.20

H.R. 3: House Democrats’ new proposal creates a process that would set prices for up to 250 drugs each year (plus insulins), including those that give patients living with rare diseases or disabilities opportunities to live their optimal quality of life. The plan uses an international reference price backstop — called the average international price (AIM) — to require that HHS-mandated prices for a selected drug do not exceed 120 percent of the drug’s average price across the U.K., Australia, France, Canada, Germany, and Japan. Patients in these countries are routinely denied medicines that they need to survive or to improve their quality of life due to the use of QALYs and average measures of clinical benefit in determining the prices of medicines and who can get them.

Over 60 Leading Patient and Disability Groups Join PIPC in Letter to New ICER VP for Patient Engagement

05.12.20

More than 60 leading patient advocacy and disability groups sent an outreach letter to the Institute for Clinical and Economic Review’s (ICER) new Vice President for Patient Engagement Yvette Venable. The groups applauded the creation of this new position, and look forward to working with Ms. Venable to ensure that ICER develops and implements a robust patient engagement framework. “As organizations that have worked across the spectrum of health care – including life sciences innovation, payer decision-making and value assessment – with missions to improve the quality of life for patients and people with disabilities, we hope that you will engage with us and take advantage of our real-world patient engagement experiences and lessons learned,” the letter states. “Do not hesitate to reach out to us and to the experts in this field described above as you consider patient engagement frameworks that may be fit for use within ICER.”

Center for Disability Rights: State’s Pharmaceutical Proposal Puts Disabled People at Risk

04.27.20

If you have read our response to Governor’s Cuomo’s 2019-2020 Budget you know that we thoroughly comb the budget to analyze every disability related policy we can find. However, occasionally one slips past us. This year we missed one appalling proposal from the Governor in a budget that was admittedly chock full of them. Hidden away in the Health and Mental Hygiene budget was a provision to authorize an independent body to use a method, QALYs (Quality Adjusted Life Years) that is built on disability discrimination to advise the state Drug Utilization Review Board to help determine the price the state is willing to pay for a number of vital medications.