The Affordable Care Act has expanded coverage to millions. But a recent Gallup survey found that 1 in 3 Americans still put off needed health care this year because it cost too much.

That’s not news to the nation’s family caregivers. They’re struggling to care for their loved ones under health insurance plans that refuse to cover the doctors or drugs their loved ones need. The idea that animated Congress to pass the ACA — providing affordable, high-quality health coverage to every American — has yet to come to fruition.

Thankfully, federal regulators just put forward a new rule that could help patients with chronic illness and disabilities receive the care they need. It still needs some important adjustments to protect the most vulnerable patients, however. Congress must take notice and urge regulators to tweak the rule.

Right now, some insurers are asking patients to shoulder large costs — on top of their premiums — to access the prescription medications they need or see their doctors.

Indeed, nearly 70 percent of low-cost plans come with “limited provider networks,” according to a McKinsey survey. In the individual health insurance market more broadly, 41 percent of plans have narrow networks. This figure has doubled over the past year.

A reporter at Forbes recently examined mid-range health insurance plans in 10 different states to see if a suite of 10 medications widely prescribed for serious conditions were covered. He found that none of the plans covered all 10 drugs. This lack of coverage leaves patients susceptible to catastrophic costs. Two plans, for example, didn’t cover a drug used to treat multiple sclerosis that costs patients more than $4,000 a month out of pocket.

Insurers counter by noting that these practices help keep premiums low. But greater out-of-pocket costs can make a patient’s overall costs much higher. In fact, such costs can be downright discriminatory against people with chronic illnesses. A study by Avalere Health found that as many as 35 of the most popular plans under the Affordable Care Act required HIV/AIDS patients to pay 40 percent or more of their treatment costs.

These sky-high drug bills often come as a surprise to patients. Critical coverage details such as formularies, which list which drugs are covered under a plan, are often too hard to find or difficult to understand.

The rule put forward by federal regulators will help prevent discrimination. For example, the Centers for Medicare and Medicaid Services proposal requires plans publish a complete list of covered drugs, so patients can make more informed decisions when picking a health plan. The draft rule also helps to ensure each plan includes a sufficient number of drugs so that patients have access to a wide range of effective therapies.

Finally, the CMS proposal requires insurers to cover all medications for the first 30 days in a new health care plan, regardless of whether they are in the policy’s formulary or not. Uninterrupted access to medication while switching plans is critical, especially for those with chronic illnesses.

These protections are a good, solid start. They advance the congressional aim that powered the ACA’s passage. But more changes are needed to make sure that legislators’ will is duly enacted and that the Affordable Care Act truly lives up to its name.

For example, insurers should be required to explain more clearly what costs patients will face for specific medications. That is, after all, what transparency is all about.

Stronger protections are also needed when it comes to cost-sharing in general. As it stands now, a health plan can put most of the drugs necessary to treat certain illnesses in its highest cost-sharing tier.

Plans should also be prohibited from making changes in the middle of the year — such as removing drugs from their formularies, changing costs to patients or adding new layers of red tape.

When the Affordable Care Act was being debated in 2009, an Obama administration official promised that “price transparency will be an important part of our efforts to reform health care.”

That statement set an admirable standard. But it is a standard that hasn’t been met yet. Greater transparency, which no one can be against, will further strengthen protections for patients and those who care for them. That’s the way to ensure the ACA fulfills congressional intent.

John Schall is CEO of the Caregiver Action Network.