December 13, 2018

FOIA Request Required to Get the Facts on NIH Decision to Suspend Research

Last Sunday, news sources were finally able to confirm that the Trump administration has already initiated efforts to halt the use of fetal tissue in federal funded research, despite their repeated insistence to the contrary. Their action in this direction started in September when Department of Health and Human Services (DHHS) launched an audit of all of the federally funded fetal tissue research projects underway. At that time, NIH and DHHS officials insisted that they would not make decisions on it prior to completion of the audit.

In fact, however, Science now reports that federal officials started taking action in September and that “in one case, it disrupted a study probing how the virus that causes AIDS initially colonizes human tissues.”

The Washington Post reports that this federal action first came to light when a senior NIH scientist in Montana told colleagues last September that NIH “has directed me to discontinue procuring fetal tissue. He added that this, “effectively stops all of our research to discover a cure for HIV.”

DHHS continued for months to deny that they had taken any action on the issue and reiterated that they would not act without the review’s conclusion. They recently told the Washington Post that NIH “has made no decisions regarding federal funding for human fetal tissue research pending the outcome of the ongoing review of all such work.” Recent evidence, however, indicates otherwise.

On Dec. 6, under the pressure of a Freedom of Information Act (FOIA) request filed by ScienceInsider, NIH finally released proof (in the form of a letter sent in November to researchers at UCSF) that their contract involving human fetal tissue might be terminated.  On Dec. 7, an NIH spokesperson finally acknowledged that, “the agency asked staff scientists to pause procurements of fetal tissue” pending the outcome of the HHS review.

Dr. Warner Greene, the director and senior investigator at the Center for HIV Cure Research at University of California San Francisco commented that “to have experimental programs stopped — because of politics is really disturbing. I believe it’s scientific censorship.”

ACA Enrollment Down and Uninsurance Rates Rising, Especially Among Children

ACA participation continues to be low in the last week of the enrollment period (Dec. 9-15). Early last week, Politico Pulse said that “signups are reflecting a steep decline, raising concerns that the Trump administration’s controversial policy changes are finally undermining the marketplaces”. Factors contributing to this include the administration’s decision to all but eliminate funding for marketing and outreach budgets to raise awareness and interest in enrollment. Kaiser Family Foundation found in a recent poll that “Just one in four Americans know the deadline to purchase Obamacare plans,” and “only three in 10 people who would buy coverage reported hearing or seeing information about how to do so in the past 30 days.”

The administration and Centers for Medicare and Medicaid Services (CMS) have also been actively promoting the purchase of inexpensive, short-term insurance policies that do not meet ACA standards (i.e. requiring coverage for pre-existing conditions, pregnancy, etc.)

Lack of interest (related to lack of funded promotion) appears to be yet another factor driving in low enrollment. Politico Pro cites “the booming economy and the continuing spread of Medicaid expansion” as contributing public disinterest in ACA coverage. The Kaiser poll showed that “four in ten 18-64 year olds who buy their own insurance or are currently uninsured say they will choose to go without coverage in 2019.”

One particularly unfortunate consequences of this dip in insurance enrollment is its effect on children. According to CNN Politics, the percentage of uninsured children in the US decreased from 7.7% in 2013 to 4.7% in 2016.  Since then, however, the percentage has risen again in “nine states — led by South Dakota, Utah and Texas…States that haven’t expanded Medicaid, as well as those with larger shares of Hispanic and Native American children, saw greater jumps.”  CNN adds that, “Three-quarters of uninsured kids live in states that haven’t expanded Medicaid…Texas leads the nation with an uninsured rate of 10.7% — more than one in five uninsured children in the US live there.”

View the latest Policy Update here.