Update: On January 22, 2018, a budget bill was passed to fund CHIP for 6 years.

With the recent legislative attempts to derail the Affordable Care Act (ACA), you may wonder what the process is for getting new legislation passed, and how new laws related to the healthcare industry may affect you. If you’re living with a rare condition like Gaucher disease, the introduction and passage of recent bills could have a tremendous impact on your health and finances.

In the second part of NGF’s podcast series, we focus on healthcare legislation, how it ties to the insurance industry, and what it means for you. We’re joined by Claire Sachs, who has worked in Washington D.C. for more almost 20 years studying healthcare policy and advising friends, family, and colleagues on complicated insurance coverage issues.

How do bills become laws?

First, it’s important to have an understanding of the process by which new bills are passed and become laws. Lawmakers introduce bills in either the House of Representatives or the Senate. Healthcare legislation can start in either chamber, but bills involving taxes or that create budgets must originate in the House. The House must also introduce any bills pertaining to healthcare. This is called the ‘power of the purse’. It’s the House’s responsibility because the House is more directly representative of the population than the Senate.

The proposed legislation goes through public hearings where experts on both sides of the argument testify on the issue. After the hearings, the committee makes recommendations (mark-ups), sometimes based on the experts’ advice and opinions. Legislators open the bill for public debate in the full chamber, and any member of the chamber can comment or propose an amendment. Amendments are voted on individually if the head of the chamber allows it to come to a vote. Ultimately, the chamber of origin votes on the proposed bill. If it passes, it goes to the other chamber.

In many cases, the other chamber rejects the bill on the grounds that it doesn’t meet their priorities. A conference committee is formed of members of both the House and the Senate. This conference committee meets to negotiate the specifics of the bill, eventually arriving at a compromise that satisfies all parties. When this step is complete, a revote in the House and Senate occurs, and the bill passes or fails. If the bill is passed by both chambers of the legislative branch, it is sent to the President, who either signs it into law or vetoes it. The legislative branch can override a presidential veto with two-thirds of the votes in both chambers, something neither party has had at once in a long time.

Variations in the legislative process

While most bills move through the legislative process in the method described above, there are variations to this chain of events that occasionally occur:

• Reconciliation: Before a Congressional session starts, both the Speaker of the House and the Senate Majority Leader inform a specific caucus, or group of people with a common interest, that they may write a specific piece of legislation in terms of spending or taxation in order to get it passed. A concurrent resolution is passed in both chambers. The caucus members then take those instructions back to their committees and make recommendations based on changes to the law that affect the budget (e.g. the individual mandate under Obamacare). Recommendations are sent to the House Budget Committee (where this kind of bill has to start), which then sends it to the floor. If more than one committee is instructed to send recommendations, the Budget Committee will wrap it up into one larger omnibus bill. If a bill is handled in this manner, it only needs 51 Senate votes instead of 60 to pass.
• Presidential power: The President can issue an executive order directing governmental agencies to take or halt certain actions through the cabinet agencies if Congress doesn’t act on a particular issue. For example, in October 2017 the President directed the Department of Health and Human Services to stop paying cost-sharing reductions (CSRs), or subsidies, to health insurance companies to help offset the cost of health insurance for certain low-income individuals and families.

How new healthcare legislation affects people living with rare diseases

Due to the decision to halt CSRs from the federal government to insurance companies on behalf of low-income individuals and families, many health insurance companies have already raised premiums in anticipation of less money coming in. Many American families are dealing with huge jumps in the amount of money they pay each month for health insurance. Some anticipate that premiums in the individual (not employer-based) markets will increase 10% every year for the next decade.

The new tax bill has already moved through the House and Senate and was signed into law by the President on December 22, 2017. Two parts of the new bill will have a tremendous impact on the Gaucher disease community, as well as others who live with rare conditions or illnesses.

Premium rate hikes

First, the new legislation repeals the individual health insurance mandate, which is the largest funding source for the ACA. Beginning in 2019, Americans will not be required to buy health insurance. But the ACA still requires subsidies for low-income individuals to offset premiums. Without funds coming in from healthy buyers, insurance companies are left with just one avenue to recover those funds: the middle class. This portion of the population makes too much to qualify as “low income” but not enough not to deal with those kinds of hikes.

Since fewer healthy Americans are likely to purchase health insurance, the insurance companies will be left with what amounts to a giant high-risk pool of insured people. This is also expected to contribute to premium increases, since there will be no way to disperse the cost of health care among people living with expensive health issues. If the pool is solely comprised of people with higher health care costs, those with complex healthcare needs, like those living with Gaucher disease, will be left to make up funding deficits through increased costs, including monthly premiums, deductibles, and the actual costs of medical appointment and medications.

In response to the passage of the tax bill, states are starting to take measures to protect Obamacare. Some states, like Maryland, propose reinstating financial penalties for people who don’t purchase health insurance.

Orphan Drug Act

Currently, the Orphan Drug Act gives tax credits to pharmaceutical and biotechnology companies for clinical research leading to the development of cutting-edge therapies for rare diseases. The current tax credit is 50 percent, but the new legislation will slash this to 25 percent.

Many people are concerned this reduction in tax credits will take away any incentives these companies have for researching and developing key treatments for rare diseases like Gaucher disease. More than 25 million Americans living with rare diseases will be affected if this type of research stalls or stops completely.

CHIP is out of money

Most states offer Children’s Health Insurance Plans (CHIP) as a way to provide healthcare coverage for low-income children with serious or chronic illnesses. But states offering this program are running out of money. Recent legislation has only guaranteed enough federal funds to keep this program going through March 2018.

The Continuing Resolution bill currently being negotiated would extend the current budget for a few weeks and would fund CHIP for six years. But it may not pass due to other budgetary concerns. The due date to vote on this bill is January 19, 2018.

Taking action to make your voice heard

While the legislative process can be frustrating, you can make a difference by speaking up. Communication with your elected representatives is essential to increasing attention on important issues like healthcare and health insurance coverage. The more constituents lawmakers hear from, the more urgent the issue becomes. This applies to state legislators as well as federal.

If you’re not sure who your elected representatives are, you can visit Project Vote Smart. This informative website allows you to see your representatives and their voting records, as well as contact information for their offices.

Also, keep in mind that elected officials don’t just stay in Washington D.C. They all have offices in their home states, and in many cases, they hold town hall meetings or other events when they go home from our nation’s capital. Show up and speak out. They want to hear what you are passionate about and why.