NGF Blog


Repealing the Affordable Care Act

How Repealing the ACA Could Impact the Gaucher Disease Community

The Affordable Care Act (ACA) represents one of the most substantial changes to our nation’s healthcare policy since the creation of Medicare and Medicaid. The legislation was first introduced and approved by a Democratic congressional majority. The Obama administration signed the ACA into law on March 23, 2010.

When the ACA was first enacted, many Americans didn’t consider healthcare to be a fundamental human right. Now, less than 10 years later, 54% of all Americans believe the government should provide a national health insurance program, according to a CNN poll.

But once again, the ACA is under fire. New efforts to strike down the entire ACA in court are underway, and so far, they’ve been successful. In this month’s podcast, we speak with Claire Sachs, author of The Patient Advocate’s Chronicle. She is a counselor and patient advocate with over 30 years’ experience studying policy and managing insurance coverage. During our conversation, we discover how the ACA helps people living with Gaucher disease and other chronic illnesses—and what we stand to lose if the ACA is repealed. For more information about healthcare legislation, NGF explains what is healthcare legislation?

The Affordable Care Act addresses several key issues, including health insurance coverage, preventative care, coverage for preexisting conditions, and healthcare costs. At its heart, the idea behind the ACA is to expand health insurance coverage using public options at both the federal and state levels.

Several key components to the ACA mean millions more Americans receive health insurance coverage and access to the healthcare services they need. First, the ACA names 10 essential health benefits insurance plans must cover:

  1. Ambulatory patient care
  2. Emergency services
  3. Hospitalization
  4. Maternity and newborn care
  5. Mental health and substance use disorder treatment
  6. Prescription drugs
  7. Rehabilitative and habilitative services and devices
  8. Laboratory services
  9. Preventive care, wellness services, and chronic disease management
  10. Pediatric care, including oral and vision

Other important ACA components include:

  • Preexisting conditions: Insurance companies cannot deny coverage or price gouge plans for individuals with preexisting conditions. People living with conditions like Gaucher disease benefit tremendously from this clause.
  • Healthcare marketplace: The ACA created state-based healthcare exchanges, or the healthcare marketplace, for consumers. The healthcare marketplace offers insurance coverage for those without employer-sponsored healthcare, or for those who prefer to purchase their own insurance. The government also subsidizes healthcare marketplace insurance plans for qualifying individuals and families. Subsidies depend on how their income compares to federal poverty guidelines. Most states use the marketplace at, but 21 states and Washington, D.C. offer health insurance through their own exchanges.
  • Medicaid expansion: The ACA expanded Medicaid, a federal and state program that provides health insurance to low income individuals and families. The expansion covers people with incomes below 138% of the federal poverty line. States that approved the Medicaid expansion receive federal funds to cover most of the cost of Medicaid expansion.
  • Annual and lifetime caps: Insurance companies cannot enforce annual or lifetime benefit caps on any of the 10 essential health benefits.
  • Cancelling coverage: No insurance company can cancel a person’s coverage, except in cases of fraud.
  • Child services: The ACA mandates all children under age 18 must receive healthcare coverage, including oral and vision care. Additionally, children may stay on their parent’s insurance plans until age 26.
  • Employer-sponsored coverage: Large employers must provide health insurance to their employees. Small businesses receive tax credits to help cover the cost of employer-provided insurance.

At first, the possibility of increased insurance premiums concerned many Americans. And while there were growing pains at first, costs for many people are now holding steady or even dropping.

It took a while for people to start accepting such a big policy change, and for insurance companies to start making money, but the benefits consumers began to see, swayed public opinion in favor of the law. In summer 2017, the last feasible congressional attempt to repeal the Act was defeated.

Since then, there have been several attempts to erode the ACA through less straightforward methods. The Tax Cuts and Jobs Act (TCJA), passed in 2017, effectively eliminating the tax penalty for people without insurance (the individual mandate) by setting the penalty to $0. This saves many people who don’t have chronic health conditions  money, but greatly reduces the likelihood of effective distribution of costs. If there are no penalties, healthy people have no incentive to buy insurance, and those with high healthcare costs end up in a giant high risk pool, which is exactly what the ACA aimed to avoid.

Then there is the legal challenge making its way through the federal courts.

New Threats & Potential Affordable Care Act Changes for 2019

To date, the ACA has been challenged in front of the Supreme Court twice. Judges upheld the constitutionality of the ACA both times. But now, a new effort to strike down the act is making its way through our legal system. Two Republican Governors and 18 Republican state attorneys general, led by Texas, initiated the lawsuit.

The lawsuit, Texas v. Azar, alleges the individual mandate of the Affordable Care Act is unconstitutional now that TCJA set the penalty tax to $0. In December 2018, a Texas district court judge agreed with the plaintiffs. The judge also concluded that the intent of lawmakers was that the individual mandate was essential to the ACA, and as such couldn’t be severed from the larger text. Therefore, the entire ACA was unconstitutional and repealing it was appropriate.

But the ruling hasn’t gone into effect yet. The judge is allowing the status quo to remain until all the appeals have been heard. In efforts to combat the ruling, and since the current administration is refusing to defend the law in court, 21 Democratic state attorneys general and the U.S. House of Representatives filed an appeal to challenge the ruling. In July, the Fifth Circuit Court of Appeals in New Orleans heard arguments in favor of overturning the original ruling. The court hasn’t yet reached a decision, and most believe this lawsuit will eventually make its way to the Supreme Court.

Additionally, another suit has been filed questioning whether the Democratic challengers to the original lawsuit have standing (whether the states will suffer harm) to appeal. Since the ACA’s opponents couldn’t repeal it through Congress, they are implementing every tactic available to them through the courts.

What Would Happen if the Affordable Care Act is Repealed?

If efforts to strike down the Affordable Care Act are successful, the American people will feel the impact quickly and the cost of repealing the affordable care act will be high. It’s estimated that over 20 million Americans will lose their healthcare coverage. States would also lose up to $135 billion in federal funding for Medicaid and subsidies paid into the healthcare marketplace. But the consequences could reach even further.

The Effects of Repealing the Affordable Health Care Act

Preexisting Condition Clauses Would Return

Insurance companies could go back to denying or delaying coverage to people living with chronic illnesses like Gaucher disease or even preexisting conditions as common as high blood pressure.

High Risk Pools Might Come Back

Since protections for people with preexisting conditions would be eliminated, people with Gaucher disease might be placed in high risk insurance pools. This would force people with expensive chronic illnesses like Gaucher disease to pay extremely high premiums for insurance coverage.

Annual and Lifetime Cap Limits Would Disappear

Living with Gaucher disease typically costs $139,000 to over $300,000 each year. If payment caps were lifted, there would be no end to the money patients would have to pay for their healthcare. And if a patient hit the limit their insurance company would pay, they’d be forced to pay full price out-of-pocket for their healthcare—potentially for the rest of their lives.

“Skinny Plans” Could Become More Popular

Under the Obama administration, so-called “skinny plans” were only effective for up to three months at a time, and these plans could not be renewed. People purchased these plans because they were typically much cheaper than insurance plans in the healthcare marketplace. Skinny plans technically provide insurance, but with minimal coverage; these plans are not required to cover the 10 essential health benefits.

A judge recently upheld the Trump administration’s final rule on skinny plans, allowing plans that last up to 12 months, and can be renewed or extended up to 36 months. This might make a skinny plan seem more attractive, but remember these types of plans do not provide full coverage. For people with chronic diseases like Gaucher disease, these plans represent a real risk to health and financial stability.

Medicaid Beneficiaries Could Suffer

Currently, federal funding matches over 90% of state Medicaid costs for certain newly eligible individuals. Repealing the Affordable Care Act would eliminate matching Medicaid funding for people covered under the Medicaid expansion.

Prescription Drug Costs Would Rise

Almost 600 drug companies participate in the Medicaid Drug Rebate Program. This program provides drug rebates in exchange for state Medicaid coverage of most of the manufacturer’s medications. Eliminating the ACA would take away increases to this rebate, raising prescription drug costs for millions.

Preventative Services Would Be More Expensive

Under the ACA, certain preventative services are free, including:

  • Annual physicals
  • Immunization vaccinations
  • Some laboratory tests

These healthcare services are essential to identifying and diagnosing conditions like Gaucher disease early, before they get out of hand. Other preventative care benefits, like breastfeeding support and counseling, and access to contraception, would disappear. For many, the impacts could be devastating, both medically and financially.

Young People Might Not Be Covered

Employer-provided insurance may stop covering dependent children until age 26. Instead, a dependent child could be dropped from their parent’s insurance plan when they turn 19 or when they were no longer a full-time student (max 23 years old). Consequently, there could be an increase in the number of young people who can’t find insurance because they have a chronic condition like Gaucher disease.

The Ripple Effect Through the Economy

It isn’t just healthcare and insurance that would feel the repercussions of the ACA’s repeal. Already, the ACA has reduced healthcare spending by $2.3 trillion. That money goes directly back into the economy. With more money in their pockets, Americans can save more or spend funds on goods and services that increase quality of life.

Repealing the ACA would significantly influence how Americans spend their money, especially if they have to pay more for health insurance. And, according to the Economic Policy Institute, as many as 1.2 million Americans could lose their jobs—not just in healthcare, but across the board. 

Will the Affordable Care Act be Repealed? You Can Make the Difference

Repealing the Affordable Care Act is an alarming proposition for many. But you can truly make a difference and help keep the ACA law. Let your elected officials on the state and federal level know you support the ACA. Call, email, or attend meetings to speak with officials directly, and make your voice heard.

Remember, lawmakers work for you. You elect your governmental officials into office, and you can also make a tremendous difference by exercising your right to vote. Websites like help you register to vote, get absentee ballots, and provide information about your legislative officials based on your address. If your representatives don’t support the ACA, you can vote for candidates who do support the law.

Finally, there’s nothing like sharing your personal story to make a huge impact. Stories make people feel a range of strong emotions, and this is what makes people act. Telling your story about living with Gaucher disease helps your legislature understand what it’s like to deal with a chronic condition. This may help them realize just how much the ACA impacts your life, and how devastating it would be if this law were repealed.


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