On May 4, Republicans in the House of Representatives repealed the Affordable Care Act (aka Obamacare) and passed the American Health Care Act of 2017 (AHCA). President Donald Trump lauded the bill and held a congratulatory ceremony in the White House Rose Garden.

No Democrats voted for the bill, which must now pass the Senate before heading to Trump's desk to sign into law. If the Senate makes changes to the bill, it returns to the House for another vote. If the House changes the Senate's bill, the process becomes increasingly political and complex.

In other words, passage of the AHCA in the House is just the beginning of what may be a long, involved and confusing process. So, why write an article on what's an uncertain possibility, not a new law?

Because the House bill shows parents, relatives and friends of medically-involved children and children with disabilities — from mild to profound what supporters of the AHCA are fighting for. By learning about the bill, you can take knowledgeable, focused and relentless political action to support or resist it.

If you have a medically-involved child or a child with disabilities, or you have medical issues that can interfere with your parenting or other aspects of your life, it's important to know what's on the horizon. Ultimately, not knowing and not acting surrenders your political power, which may prove devastating to you, your children and those you love.

Critical details

This section will focus on several parts of the AHCA that may prove most horrific to families of medically-involved children, children with disabilities, elderly family members or others with pre-existing conditions.

It assumes that what happens to one family member's health affects the entire family. Similarly, the family's income affects the entire family as it affects its eligibility for Medicaid, the Children's Health Insurance Program (CHIP) and the Supplemental Nutrition Assistance Program (SNAP; "food stamps") as well as its ability to pay what looks like colossal insurance premiums for pre-existing conditions.

Two caveats about the details.

First, if the AHCA becomes law, much of the details and what's likely to happen to you and your children will depend on whether your state applied for and received a federal waiver to let insurers eliminate the ACA's Essential Health Benefits (EHB), such as emergency services, maternity care, hospitalization and laboratory services. From the comments of Dr. Tom Price, Secretary Health and Human Services, it's likely that he'll quickly and enthusiastically approve these waivers.

Second, it will depend on Trump's willingness to make a firm, long-term commitment to insurers that the government will meet its cost-sharing obligations to them. This is the money that helps insurers cut costs for lower income policy holders. One example is less-expensive co-pays.

Under Obamacare, CNBC, The Washington Post and many other news outlets have reported tremendous uncertainty about this commitment, causing several insurers to say they'll probably leave some states. Similarly, and in line with the nonpartisan Congressional Budget Office (CBO) prediction, in 2018 premiums of the remaining insurers will likely increase by some 19 percent, making insurance unaffordable for some families.

Pre-existing conditions

Unlike Obamacare, the AHCA allows states to apply for waivers that will make premiums relatively inexpensive for younger, healthy people and very expensive for older people and people with pre-existing conditions.

Families that have medically-involved children, children with disabilities or adults with asthma, cancer, diabetes or virtually any other chronic medical problem will face unsustainable increases in premiums. And they may well find that their medically-involved children or children with disabilities are ineligible for CHIP or Medicaid.

If this describes your family, you'll face earthshaking and virtually unanswerable questions. These include: How do you get quality healthcare for your medically-involved child, your child with disabilities and your other family members? How can you ensure that they'll have the opportunities needed to achieve their dreams?

Essential health benefits (EHB) and lifetime caps

In its analysis of the AHCA, the CBO inserted a critical paragraph with this dry but dire statement:

"People living in states modifying the EHBs who used services or benefits no longer included in the EHBs would experience substantial increases in out-of-pocket spending on healthcare or would choose to forgo the services. Services or benefits likely to be excluded from the EHBs in some states include maternity care, mental health and substance abuse benefits, rehabilitative and habilitative services, and pediatric dental benefits ...

"Moreover, [Obamacare's] ban on annual and lifetime limits on covered benefits would no longer apply to health benefits not defined as essential in a state. As a result, for some benefits that might be removed from a state's definition of EHBs but that might not be excluded from insurance coverage altogether, some enrollees could see large increases in out-of-pocket spending because annual or lifetime limits would be allowed."

Thus, if your medically-involved child annually needs upward of $500,000 of medical coverage, but you could only afford a policy with an annual ceiling of $100,000 and a lifetime cap of $300,000, you have insurance that doesn't fully insure a single year.

Would you beg for help? Would you crowdsource? Would you cash in your retirement? Would you lose days of work and nights of sleep?

Hollowed-out policies with coverage chasms

Given the stratospheric costs of pre-existing conditions, the loss of Obamacare's EHBs, the addition of lifetime caps for non-EHB services, and the high probability of unstable markets (as explained in the next section), many people won't be able afford any health insurance or only hollowed-out policies.

These policies will force them to spend mountains of money — money they may not have on mountains of medical services. How high can mountains be? For people without health insurance that covers MRIs and laboratory services, the MRI mountain can easily cost $1,700, the laboratory mountain $1,400.

For many of these people, the coverage chasms are so deep and wide that they'll see bankruptcy well before they can afford fresh fruits. Simply put, their hollowed-out insurance doesn't insure.

Unstable healthcare markets

Among the CBO's many dire warnings is one about market stability and individual policies the kind that many people need to buy for themselves and their families:

"About one-sixth of the population resides in areas in which the [individual] market would start to become unstable beginning in 2020. That instability would result from market responses to [the approval of state wavers] ... The waivers in those states would have another effect: Community-rated premiums would rise over time, and people who are less healthy (including those with preexisting or newly acquired medical conditions) would ultimately be unable to purchase comprehensive [individual] health insurance at premiums comparable to those under [Obamacare], if they could purchase it at all ...

"As a result, the [individual] markets in those states would become unstable for people with higher-than-average expected healthcare costs. That instability would cause some people who would have been insured in the [individual] market under current law to be uninsured."

But market instability and plans to raise premiums have already begun, due in large part to Trump's inaction. According to CNBC, a spokesperson for insurance lobbying group America's Health Insurance Plans [AHIP] expressed concern about whether the subsidies will continue: "AHIP's position and unwavering focus on cost-sharing subsidies remains the same — we need swift action and long-term certainty on this critical program. It is the single most destabilizing factor in the individual market, and millions of Americans could soon feel the impact of fewer choices, higher costs and reduced access to care."

CNBC also reported that Andy Slavitt, former acting director of the Centers for Medicare and Medicaid Services (CMS) said, "The most conservative thing is [for insurers] to leave the market. The second most conservative thing ... is to price premiums as if the subsidies won't be paid." In addition, he tweeted that a "19 percent Trump surcharge will be baked into 2018 premiums, which are being proposed in coming weeks because insurers will factor the uncertainty about the subsidies into their plan prices."

Could your family afford a 19 percent increase in premiums, especially if you had to pay higher rates because you had a medically-involved daughter with cancer? Or if you had a son with learning disabilities and attention deficit hyperactivity disorder (ADHD) who needed psychological counseling, ADHD medication, a highly-structured program of applied behavior analysis, and specialized tutoring?

If you couldn't afford even a hollowed-out policy, what would you do? How could you help your child? How would you handle your stress, or would it handle and ultimately devastate you?

Your actions

This article has ignored many of the AHCA's other specifics, such as severe budget cuts to Medicaid that will imperil many Americans. But the message is clear: Learn all you can about the AHCA, form an opinion on whether it's a good bill, and act.

Act by joining and participating in highly organized, highly focused and highly persistent groups that will accurately and comprehensively inform voters of the AHCA's details and their implications for everyone including medically-involved children and children with disabilities. You'll find many such pro-and-con groups, including local ones, on the internet.

Then, vote in every election from school board to president. During the campaigns, respectfully but insistently ask sharp AHCA-related questions to candidates and encourage the people you know to do the same.

Just don't be silent under any circumstances. It's critical to deal with the AHCA as if it's a matter of life or death. It may very well be.