The Hydrocephalus Scoop on Capitol Hill

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Hydrocephalus-related policy issues have been on the move in Congress. We thought we’d give you a quick rundown on what’s going on and how it impacts our community.

Surprise Billing

Members of Congress are working on bi-partisan proposals to address the problem of “surprise billing.” They hope to pass legislation before the end of the year.

Surprise billing? Remind me what that is again?

In the US health care system, insurers and health care providers negotiate greatly reduced fees for services. An insurance provider might pay $500 for something that would cost people outside that insurer’s network much more. Patients generally know this ahead of time and make choices based on what their insurance will cover.

In both emergency and routine treatment situations, though, doctors and hospitals sometimes provide care not covered by a patient’s insurance. As a result, the patient will often be on the hook for thousands of dollars. This happens for a variety of reasons—the provider may not know enough about what’s available under the patient’s insurance, they may have no other option, or they may just make a mistake. 

Committees in the House of Representatives and the Senate have passed separate bills that would do things like establish a median benchmark for these situations. In other words, the costs for any services that aren’t covered would still be negotiated as if the service were covered. This approach would significantly reduce the amounts patients would eventually be responsible for. 

The members of Congress championing this bill have asked groups like ours for any stories about how “surprise bills” might have impacted patients and their families. Take a minute to go to our Hydrocephalus Patient Stories survey to let us know if you’ve had a “surprise bill.” Those stories will be incredibly helpful in getting a bill passed.

ACA Reform

Everyone in DC is still talking about the Affordable Care Act (also known as Obama Care). Some want to keep it. Some want to change it. Some want to replace it. Some want to scrap it. Whatever happens, patient groups like ours are most concerned about coverage for pre-existing conditions like hydrocephalus. No one wants to go back to the days when people could be turned down for coverage just because they had a health problem. 

Members of Congress are concerned about this as well. That’s why the Democrat and Republican leaders of a major committee have introduced a bi-partisan bill to protect access to pre-existing conditions and make other changes to the ACA that will make health care insurance more affordable. You can use the same form above (Hydrocephalus Patient Stories) to share your story about how eliminating coverage for pre-existing conditions would impact you. We’ll pass these on to members of Congress as well.

Prescription Drug Pricing

You’ve probably heard the horror stories from people who’ve faced dramatic increases in their prescription drug costs. Some have had to make choices between critical medicines and other important things like groceries or utility bills. Congress is getting the message and is working on bills to increase drug price transparency, change the rules for negotiating prices, and stop the “incentives” drug companies sometimes provide to those who manage prescription drug insurance programs. These bills are, once again, bi-partisan, just like the surprise billing and pre-existing condition bills noted above (cool, right?). Because both sides support these proposals, we’re likely to see some movement in coming months. You can share any concerns you have about drug pricing on the same form noted above. (Or just click HERE.)

Value-Based Care and QALYs

“QALY” has got to be an acronym, right? 

Absolutely. It stands for Quality-Adjusted Life Years, and it’s at the center of a disturbing discussion in DC. An organization called ICER (a.k.a. the Institute for Clinical and Economic Review) is urging policymakersto change reimbursement rules to assign an economic value to the life of a person with a chronic condition. That value would be used to determine the cost-effectiveness of health care decisions. 

Wait, what? That sounds really bad.

It is. QALYs often limit access to treatments and drugs for individuals with chronic conditions like hydrocephalus because they’re used to base treatment plans on the “value of a life” as opposed to what’s medically necessary. The Hydrocephalus Association is part of an organization called “Value our Health,” which is fighting against the use of QALYs. Stay tuned as we work with this coalition to determine what the hydrocephalus community can do!

Other Stuff

As if all of the above weren’t enough, HA is also following a few other items focused on funding for hydrocephalus-related research. These include programs at the Department of Defense, the National Institutes for Health and the Patient-Centered Outcomes Research Institute.We’re also keeping an eye on various federal bills to legalize marijuana, particularly for medicinal purposes. 

There’s a lot going on but have no fear! We’re keeping track of as much as we can. Stay tuned for updates.

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