Health Care & Insurance

Health Care Reform

The new Administration and the 115th Congress have stated that they will repeal and replace the Patient Protection and Affordable Care Act (ACA). The ACA eliminated pre-existing condition exclusions and waiting periods and established new health insurance options. While the ACA provides protections for people with pre-existing conditions, health care reform is still needed to ensure that everyone has affordable access to coverage.

Affordable Care Act (ACA), Essential Health Benefits, and Pre-existing Conditions

Congress has taken no final action to repeal ACA (or Obamacare).  The administration, however, has made several decisions that could restrict or end guaranteed access to affordable health insurance for people with pre-existing conditions such as PKD. Read our monthly summaries for the most recent information.  

Read our monthly summaries for the most recent information.

ACA Timeline

On Tuesday, Sept. 26, Senate Majority Leader Mitch McConnell announced that the Senate would not vote on the Graham-Cassidy legislation, the latest attempt to repeal and replace the Affordable Care Act (ACA). The proposed legislation would have made significant changes to our health care and insurance systems and dramatically impact the PKD community. Thanks to the almost 500 PKD advocates who reached out to their senators, urging them to oppose the legislation. We’re grateful for your support and advocating on behalf of the PKD community. We will continue to monitor proposed health care legislation.
On Sept. 13, Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), and Ron Johnson (R-WI) released a new plan to repeal and replace the Affordable Care Act (ACA). This proposal is commonly referred to as Graham-Cassidy, and it must be considered by the Senate before Sept. 30 in order to meet technical Senate rules for a 50 vote threshold. What is in Graham-Cassidy? Graham-Cassidy will have a devastating impact on people with chronic conditions including polycystic kidney disease. People with chronic conditions like PKD will pay more for less benefit. Graham-Cassidy repeals the Medicaid expansion, premium tax credits, and cost-sharing reduction (CSR) payments, and redistributes the money to the states in block grants to operate their health care programs. 
  • The premium tax credits, CSRs, and Medicaid expansion are all intended to help people afford their health care. 
  • The funding included in Graham-Cassidy would expire in 2026 without additional Congressional action.
Graham-Cassidy also allows states to opt out of important protections that exist to protect people with chronic conditions. States could waive community rating, which ensures that everyone pays the same premium, regardless of health status. States could waive the essential health benefits requirements. In states that waive these requirements, people with chronic conditions may:
  • Pay higher premiums
  • Have greater difficulty finding plans that cover all of their needed medicines and services 
  • Have no limit to their out-of-pocket expenses
  • Be subject to lifetime and annual limits on their coverage
Graham-Cassidy contains the same harmful cuts to the Medicaid program as previous ACA repeal bills like the AHCA and BCRA. These proposed cuts to Medicaid will harm the nation’s poorest and sickest populations.
  • By Congress reducing hundreds of billions of dollars in Medicaid payments to the states, states could cut enrollment, limit benefits, or reduce payment rates to providers and plans. 
  • This could mean that fewer low-income patients have access to health insurance through Medicaid or to additional benefits offered by Medicaid.
  • What about bipartisan efforts to improve the ACA? While the Senate considers Graham-Cassidy, there is a better option: a bipartisan stabilization effort being led by Senators Lamar Alexander (R-TN) and Patty Murray (D-WA), who have held a series of hearings to explore options to stabilize the existing markets. These conversations have stalled in the wake of the announcement of Graham-Cassidy.
The Senate rejected a proposal to repeal the ACA (Obamacare) without a replacement. A replacement plan is still being debated, with a vote planned today (Thursday, 7/27). Continue taking action by contacting your Senators to urge them to continue to protect PKD patients and all those with chronic diseases.
The Senate passed a motion to proceed with debate on legislation to repeal and replace our current healthcare legislation, the Affordable Care Act (ACA). Their actions may put access to affordable care for people with chronic conditions like PKD at risk. PKD advocates cannot ease up on their efforts to advise their elected representatives in the House and Senate of their views on health insurance for people with pre-existing conditions. The message is simple: We urge Congress to keep without interruption guaranteed access to affordable health insurance that covers essential health benefits for people with PKD and other pre-existing conditions. The current ACA is not perfect. However, it is better than what PKD patients had in the past, when insurance companies either denied health coverage because of health status, imposed annual or lifetime caps on benefits, or priced insurance beyond the ability of patients to afford it. Congress can repair what is broken; it must not repeal what is working for millions of Americans with preexisting conditions. We encourage PKD advocates to continue to advise their elected officials of the importance of this issue to themselves, their families, and their communities.
On May 4, 2017, the House of Representatives voted 217 to 213 to pass the American Health Care ACT (AHCA) in a major step toward repealing and replacing the Affordable Care Act (ACA). The Senate has released a new health care bill called the Better Care Reconciliation Act (BCRA). As the Senate prepares to vote on legislation that will make significant changes to our health care system, advocates must ensure that new legislation meets the needs of people with PKD. The AHCA, passed by the House in May, raises significant concerns for Americans affected by chronic diseases, including PKD. The new amendment contains several provisions that impact the PKD community:
  • Essential Health Benefits. Currently, all health care plans under the ACA require minimum essential benefits; including doctors’ services, inpatient and outpatient hospital care, prescription drug coverage, pregnancy and childbirth, mental health services, and more. The AHCA as amended will let states choose to opt out of EHB requirements. States will be able to set their own EHB categories, meaning benefits will vary state by state.
  • Annual and lifetime caps. The ACA eliminated annual and lifetime caps for services that fall into the ten EHB categories. States may choose to only mandate coverage for certain EHBs which will result in fewer services that apply to the lifetime and annual benefits limits and maximum out-of-pocket cost limits.
  • Insurance cost for people with pre-existing conditions. The ACA established adjusted community rating meaning that insurers cannot raise premiums based on health status, medical claims or gender. Through the AHCA, states can opt out of the requirement that insurers charge the same premium for people with pre-existing conditions (like PKD) as they charge for people without pre-existing conditions. High-risk pools have been proposed as a way to provide insurance to everyone; however, this would allow states to put people with pre-existing conditions into high-risk insurance pools. These pools would likely be more expensive and many individuals with pre-existing conditions could still be charged at a higher cost.

More resources from member organizations

National Health Council

The PKD Foundation is a member of the National Health Council (NHC). The NHC has taken a leadership role to ensure that people with chronic disease, like PKD, are considered in any effort to replace the ACA. The PKD Foundation supports NHC’s domains and values for health care reform.

  • Ensure meaningful and affordable access
  • Coverage for pre-existing conditions
  • Eliminate annual and lifetime benefit caps

National Organization for Rare Disorders (NORD)

The PKD Foundation is also a member of the National Organization for Rare Disorders (NORD). In February 2017, NORD put forward a set of Principles for Health Coverage Reform.