Has Genetic Privacy Been Strained By Trump's Recent ACA Moves?

Michelle Andrews
www.npr.org
Originally posted July 11, 2018

Here is an excerpt:

However, if you develop symptoms of a disease or are diagnosed with a medical condition, GINA no longer protects you. That's where the Affordable Care Act steps in. It prohibits health plans from turning people down or charging them more because they have a pre-existing condition.

"GINA did something good, and the ACA was the next important step," said Sonia Mateu Suter, a law professor at George Washington University who specializes in genetics and the law.

The Trump administration put those additional ACA protections in doubt last month when it said it won't defend that part of the law, which is being challenged in a lawsuit brought by the attorneys general of 20 states.

The administration said that since the penalty for not having health insurance has been eliminated starting in 2019, the provisions that guarantee coverage to people with pre-existing conditions and prohibit insurers from charging them higher premiums should be struck down as well.

The protections are a priority with many voters. In a June poll by the Kaiser Family Foundation, two-thirds of voters said that continuing protections for people with pre-existing conditions will be either the single most important factor or very important in determining their vote in this fall's elections.

The information is here.

Changing genetic privacy rules may adversely affect research participation

Hayley Peoples
Baylor College of Medicine Blogs
Originally posted May 26, 2017

Do you know your genetic information? Maybe you’ve taken a “23andMe” test because you were curious about your ancestry or health. Maybe it was part of a medical examination. Maybe, like me, you underwent testing and received results as part of a class in college.

Do you ever worry about what could happen if your information landed in the wrong hands?

If you do, you aren’t alone. We’ve previously written about legislation affecting genetic privacy and public resistance to global data sharing, and the dialog about growing genetic privacy concerns only continues.

Wired.com recently ran an interesting piece on the House Health Plan and its approach to pre-existing conditions. While much about how a final, Senate-approved Affordable Care Act repeal and replace plan will address pre-existing conditions is still speculation, it brings up an interesting question – with respect to genetic information, will changing rules about pre-existing conditions have a chilling effect on research participation?

The information is here.

The GOP's risky premium pledge

Jennifer Haberkorn
Politico.com
Originally posted June 5, 2017

Senate Republicans may be all over the map on an Obamacare repeal plan, but on one fundamental point — reducing insurance premiums — they are in danger of overpromising and underdelivering.

The reality is they have only a few ways to reduce Americans’ premiums: Offer consumers bigger subsidies. Allow insurers to offer skimpier coverage. Or permit insurers to charge more — usually much more — to those with pre-existing illnesses and who are older and tend to rack up the biggest bills.

Since there’s no appetite within the GOP for throwing more taxpayer money at the problem, Republicans will need to make some hard decisions to hit their goal. But the effort to drive down premium prices will inevitably create a new set of winners and losers and complicate leadership’s path to the 50 votes they need to fulfill their seven-year promise to repeal Obamacare.

“Anyone can figure out how to reduce premiums,” said Sen. Chris Murphy (D-Conn.). “You can reduce premiums by kicking everybody that has a pre-existing condition off insurance or dramatically reducing benefits.”

Republicans say that Obamacare’s insurance regulations are responsible for making coverage prohibitively expensive and contend that premiums would fall if those rules are rolled back. They say they have multiple ideas about how to roll those back while also insulating the most vulnerable but have yet to weave those together into actual legislation.

The article is here.

JAMA Forum: Those Pesky Lines Around States

Larry Levitt
JAMA Forum Blog
Originally posted October 19, 2016

Here is an excerpt:

Allowing insurers to then sell plans across state lines would actually worsen access to coverage for people with preexisting conditions, since insurers would have a strong incentive to set up shop in states with minimal regulation, undermining the ability of other states to enact stricter rules.

Let’s say Delaware wanted to attract health insurance jobs to its state with industry-friendly regulations—for example, no required benefits (such as preventive services or maternity care) and no restrictions on medical underwriting (meaning people with preexisting conditions could be denied coverage). Insurers operating out of Delaware could offer cheaper health insurance by cherry-picking healthy enrollees from other states. If New York tried to require insurers to expand access to people with preexisting conditions or mandate specific benefits, its carriers would get stuck with disproportionately sick people.

Delaware is not a random example here. This is exactly what happened in the credit card industry after the Supreme Court ruled in 1978 that credit card companies could follow interest rate rules in the states where they operate, not the state where the cardholder lives. Two states—Delaware and South Dakota—moved quickly to deregulate interest rates, and banks followed suit by moving their credit card operations to those states. By 1997 Delaware had 43% of the nation’s credit card volume.

The blog post is here.

Pre-existing Conditions and Medical Underwriting in the Individual Insurance Market Prior to the ACA

Gary Claxton, Cynthia Cox,  Anthony Damico, Larry Levitt, and Karen Pollitz
Kaiser Family Foundation
Originally posted December 16, 2016

Here is an excerpt:

Estimates of the Share of Adults with Pre-Existing Conditions

We estimate that 27% of adult Americans under the age of 65 have health conditions that would likely leave them uninsurable if they applied for individual market coverage under pre-ACA underwriting practices that existed in nearly all states. While a large share of this group has coverage through an employer or public coverage where they do not face medical underwriting, these estimates quantify how many people could be ineligible for individual market insurance under pre-ACA practices if they were to ever lose this coverage. This is a conservative estimate as these surveys do not include sufficient detail on several conditions that would have been declinable before the ACA (such as HIV/AIDS, or hepatitis C).  Additionally, millions more have other conditions that could be either declinable by some insurers based on their pre-ACA underwriting guidelines or grounds for higher premiums, exclusions, or limitations under pre-ACA underwriting practices. In a separate Kaiser Family Foundation poll, most people (53%) report that they or someone in their household has a pre-existing condition.

The article is here.