Big Win for Better Data for All: NY Governor Kathy Hochul Signs AA and NH/PI Data Disaggregation Bill into Law!

Guest post by Medha Ghosh, Health Policy Coordinator, Coalition for Asian American Children and Families

On December 23, 2021, Governor Kathy Hochul signed the NYS Bill S6639/A6896 on Asian American and Native Hawaiian/Pacific Islander (AA and NH/PI) data disaggregation into law. 

This law mandates that all State agencies, departments, boards, and commissions that already collect demographic data must now collect data on the top ten most populous AA ethnic groups and specific NH/PI ethnic groups of New York State along with data on languages spoken.  The law also specifies that such government entities must release such data to the public on an annual basis. This huge victory in the fight for better data for all was only made possible by over ten years of persistent advocacy by CACF and CACF’s members and partners!   

Over the past two years, the COVID-19 pandemic has emphasized the distinctive struggles faced by our AA and NH/PI communities in New York. While State and City public health data failed to show the disparities experienced by these communities, independent studies showed how Chinese Americans had the highest rates of COVID-related death and South Asian Americans the highest rates of COVID-related hospitalization in New York City. Disaggregated data will allow state officials and community organizations to better serve all communities through this ongoing public health emergency and beyond.

You can read more about the bill here and here.

Guest post by Lois Uttley, Women’s Health Program director at Community Catalyst and co-founder of Raising Women’s Voices for the Health Care We Need

When the first wave of COVID-19 hit New York City in the spring of 2020, it starkly revealed something health advocates had been worried about for some time. The neighborhoods when people of color were being hardest hit, such as in Queens and Brooklyn, were also the places where hospitals had closed or downsized in recent years, leaving inadequate capacity to meet the pandemic needs. The result was overcrowding, long lines and delays in evaluation and treatment.

A new law signed by Gov. Kathy Hochul in late December will help address this problem when hospitals and most other health facilities propose new changes, including reducing or eliminating services. Described as “landmark” legislation by its Assembly sponsor, Health Committee Chair Richard Gottfried, the Health Equity Assessment Act will for the first time require an independent assessment of the impact of such proposed changes on medically-underserved New Yorkers. The legislation (A191a/S1451a), sponsored in the Senate by Health Committee Chair Gustavo Rivera, was a top 2021 priority for Health Care for All New York and allies in the Community Voices for Health System Accountability (CVHSA) alliance.

The required independent health equity assessment would take place during preparation of a health facility’s Certificate of Need (CON) application to the New York State Department of Health seeking approval of a proposed transaction. Under the law, such an assessment must determine whether a proposed project would improve access to hospital services and health care, improve health equity and reduce health disparities within the facility’s service area for medically-underserved people. “Medically-undeserved” is defined in the law to include racial and ethnic minorities, immigrants, women, LGBTQ+ people, people with disabilities, uninsured people and those with public insurance (such as Medicaid) as well as older adults, rural residents and people living with “a prevalent infectious disease or condition” (such as HIV).

Included in the assessment will be the extent to which the project would provide indigent care (both free and below cost), the availability of public or private transportation to the facility, the means of ensuring effective communication with non-English speaking patients, as well as those with speech, hearing or visual impairments and the extent to which the project would reduce architectural barriers for people with mobility impairments.

The health equity assessment must involve meaningful engagement of residents and leaders of affected communities, as well as public health experts, employees of the health facility and other stakeholders. HCFANY and CVHSA fought hard for the requirement that the health equity assessment must be posted on the NYS DOH website, as well as the health facility’s website, so that the community can read the assessment document and provide comments.

While the law does not require the disapproval of projects that don’t fare well in health equity assessments, it will certainly encourage health facilities to include provisions that address the needs of medically-underserved people, in order to secure state approval. Moreover, the assessments will provide valuable information for DOH officials and members of the Public Health and Health Planning Council, which approves major projects. They could potentially attach conditions to approvals of projects, in order to improve the health equity impact.

The effective date of the law, which was originally six months from signing, was extended out to 18 months by the Governor’s office, to allow for rulemaking by the NYS DOH and PHHPC. This means that HCFANY and CVHSA members will need to be actively involved in the rulemaking process, to ensure that the intent of the law is preserved in the implementing rules.

Across the United States, communities are struggling to overcome a global pandemic. And at the same time, Black, Indigenous, and peoples of color are once again disproportionately impacted due to systemic racism. In addition to overcoming the numerous inequities that have long been ignored, in the time of COVID-19, Asian Americans — particularly those who are East Asian-presenting — have seen an explosion of xenophobia and racial violence. Health Care For All New York (HCFANY) condemns this racial violence and urges our elected officials to enact policies that advance health equity. HCFANY is a statewide coalition of 170 consumer-focused organizations dedicated to achieving quality, affordable health coverage for all New Yorkers, and ensuring that the concerns of real New Yorkers are heard and reflected in policy conversations.

According to Stop AAPI Hate, a joint initiative that has been tracking Coronavirus-related incidents of harassment, hate speech, and/or violence against Asian Americans and Pacific Islanders, there were 3,795 reported incidents in the US from March 19, 2020 to February 28, 2021. Over 500 of these incidents (14%) took place in New York. NYPD data shows there were at least six attacks on Asian Americans in January and February 2021, compared to none during those months in 2020. Additionally, many bias-based incidents continue to go unreported.

Hate crimes themselves perpetuate health equity issues. Discrimination-related stress has been shown to result in health disparities, and victims of hate crimes suffer long-term effects like depression, anxiety and post-traumatic stress disorder (PTSD).

There is a long history of racism and xenophobia against Asian Americans in the U.S., particularly during times of economic hardship, alleged threats to national security, and/or disease. And there is a long history of anti-Asian racism being enacted into law, such as the Chinese Exclusion Act and the incarceration of Japanese Americans during World War II. Underlying these policies are racist and harmful stereotypes of Asians as a “model minority,” pitting communities of color against each other and rendering those who struggle invisible; or Asian Americans as perpetual foreigners and un-American in their own communities. The COVID-related hate incidents of today, fueled by racist statements and misplaced anger towards those perceived as Chinese, perpetuate this history.

Inequities faced by Asian Americans and other communities of color have also been demonstrated through the inadequacy of COVID-19 data reporting and subsequent public health response efforts. Data collection and reporting on race and ethnicity can be vastly different across state, county, and local health systems. For example, Asians are sometimes classified as “Other” and/or aggregated with other racial groups due to their smaller population size. And even when Asian American population data is collected and reported, failure to disaggregate the data by Asian ethnicity erases the variations in economic, social, and cultural diversity among Asian subgroups.

These differences have an effect on whether certain Asian populations, especially immigrants, are likely to have health insurance coverage, whether they may be at increased risk of certain chronic conditions or diseases, and what interventions may be more successful. It is impossible to address these issues without access to data that accurately defines the problem.

Immigrant communities also face barriers to COVID-19 testing, care, and vaccination because of the lack of language access and cultural relevance of accurate information on prevention, testing, and vaccines. Additionally, anti-immigrant attacks, from hate crimes to Trump-era attempts to curtail immigrant access to care, intensify fears and create barriers to care for members of multi-generational households, especially those with mixed immigration status.

To advance health equity, we must come together to fight for racial justice. We need to hold policy makers at all levels of government to be accountable to the needs of communities that are most impacted by systemic racism, and also be committed to creating systemic changes to ensure equitable access to healthcare. HCFANY applauds the State’s commitment to providing $13 Million to support Asian American community-based organizations and to support implementation of data disaggregation of diverse Asian ethnic groups. HCFANY urges state and local leaders to: (1) work in partnership with the Coalition for Asian American Children and Families (CACF) and partnering Asian American community organizations in implementing the robust collection, monitoring, and reporting of disaggregated health data; (2) expand affordable Essential Plan coverage to all New Yorkers, regardless of immigration status; (3) support safety net hospitals that treat diverse New Yorkers of all race, ethnic, national origin, and language backgrounds; and (4) ensure equity and access (especially language access) to COVID-19 information, testing, treatment, and vaccines through community-based measures like pop-up vaccine sites with appropriate in-person interpretation and translation in hard-to-reach AAPI and other underserved communities.

Medicaid Matters New York and Health Care for All New York – the two major statewide health care consumer advocacy coalitions – applaud the State Legislature for several historic additions to the adopted state budget for 2021-22 related to funding for public schools and universities, rental and mortgage assistance, assistance to undocumented essential workers and small businesses, and taking some first steps toward restoring progressivity to the state’s tax system.  Millions of low-income New Yorkers who rely on our state’s public health insurance programs will benefit from these improvements to the Governor’s initial set of budget proposals.

However, our State leaders failed to break ground in health care, which is disappointing in light of a decade of austerity budgets and the ongoing nature of the COVID-19 public health crisis.  Medicaid Matters and HCFANY are specifically concerned about the following issues: 

  • The arbitrary Medicaid global spending cap was extended for another year.  As a consequence, Medicaid continues to be approached with an austerity mindset.  For ten years, Medicaid has suffered from unnecessary cuts, impacting access to services for low-income people, families, people with disabilities and communities.
  • Public health insurance coverage was not expanded to low-income immigrants who have had COVID-19.  Instead, those who are undocumented remain reliant solely on Emergency Medicaid for acute care and charity care programs for ongoing treatment.  As a consequence, many will likely forego seeking necessary care, thereby prolonging illness and suffering, risking death, and incurring medical bills they cannot pay.
  • The home care crisis and institutional bias remain unaddressed.  Home care workers play a vital role in serving and protecting disabled New Yorkers and seniors living independently, a role that became even more critical and evident during the pandemic.  However, New York’s failure to invest in home care has created a “worst in the nation” workforce crisis that prevents meaningful access to home care services for thousands of people and results in greater institutionalization.
  • This is the first time in decades that New York State has adopted a discriminatory maternity coverage policy.  Instead, only citizen and lawfully residing immigrant women will enroll in free (state-funded) Marketplace coverage after their Medicaid ends—continuing a system that allows for disruptions in care. 
  • No new initiatives were created to address inequities that are wide-spread throughout our state’s public health, health care, and health coverage systems, despite significant federal pandemic-related funds the state has received over the past year to address these disparities.  The pandemic has revealed them clearly, and they can no longer be ignored.

On the positive side, we thank both the Governor and Legislature for these new initiatives:

  • Eliminating all premiums in the state’s Essential Plan that provides insurance coverage to low-income people and families who are not eligible for Medicaid.  This move will enable them to keep medical, dental, and vision coverage in place without financial barriers, an important step during the ongoing pandemic.
  • Protecting the financial stability of community health centers and other safety net providers by delaying the implementation of the planned pharmacy carve-out from the state’s Medicaid Managed Care program.

We also acknowledge and appreciate restorations in funding cuts initially proposed by Governor Cuomo that made no sense given our ongoing pandemic:

  • An across-the-board Medicaid rate cut that particularly threatened safety net hospitals that serve large numbers of Medicaid and uninsured patients.
  • Elimination of Indigent Care Pool funding to public hospitals.
  • Cuts to the state’s Vital Access Provider Assistance Program that keeps certain safety net and rural hospitals financially afloat.
  • Additional cuts to Article VI public health funding to New York City.
  • Allowing insurers to impose restrictions on the ability of doctors to prescribe certain drugs to Medicaid patients (elimination of the provision known as “prescriber prevails”).
  • Another 25% cut to home care workforce recruitment and retention money that would have further harmed community-based long-term care.
  • Cuts to programs serving adult home residents.

While as a whole and on the surface it may appear that New York continues to meet the needs of those enrolled in our state’s public health insurance programs and the providers they rely on, the 2021-22 adopted budget fails to make needed investments to turn away from austerity politics, protect all immigrants, expand community-based long-term care, and promote health equity.  A lack of harm must not be confused with a budget that provides for what New Yorkers need.  We can do better, and we must.