National
Higher AIDS drug costs under Obamacare?
Sebelius urged to allow drug company subsidies in exchanges
AIDS groups sent a letter to HHS Secretary Kathleen Sebelius urging her to allow drug company discount programs to operate under Obamacare. (Washington Blade file photo by Michael Key).
AIDS advocacy organizations say people with HIV could be forced to pay hundreds of dollars more each month for life-saving prescription drugs through health insurance plans required under the soon-to-be implemented Affordable Care Act known as Obamacare.
Leaders of more than 160 national and local organizations advocating for people with AIDS and other diseases sent a joint letter on Monday to Kathleen Sebelius, the U.S. Secretary of Health and Human Services, urging her to allow drug company discount programs to operate under Obamacare.
“We, the undersigned organizations and individuals, are writing to urge that the HHS issue clear guidance on the allowance of drug industry-provided co-payments, co-insurance, or other out-of-pocket discount cards and coupons in the Affordable Care Act’s Health Insurance Marketplaces,” the letter to Sebelius says.
“As people living with, and organizations serving people with HIV, HCV [Hepatitis C Virus], and other life-threatening and chronic health conditions, we are alarmed by the possibility of the prohibition of these critical financial lifelines,” the letter says.
The signers of the letter were referring to a controversy that erupted last month when Sebelius released a letter she sent to U.S. Rep. Jim McDermott (D-Wash.) saying HHS determined that the Obamacare health insurance exchanges were not “federal health care programs” as defined by a separate federal law aimed at curtailing health care fraud.
By declaring that the exchanges are not federal health care programs HHS, among other things, made the exchanges and the insurance plans sold under them exempt from a provision of the Social Security Act that bans pharmaceutical companies from providing insurance co-payment discounts or subsidies to patients for the purchase of prescription drugs.
Although this initial action by HHS drew strong support from AIDS organizations it surprised and angered many private health insurance companies and federal and state consumer protection regulators, who argued that the exemption would take away an important tool for preventing and prosecuting health care fraud.
Critics, including U.S. Charles Grassley (R-Iowa), noted that the Social Security Act prohibits pharmaceutical companies from providing co-payment assistance to patients under Medicare and Medicaid and that the Affordable Care Act should be considered as a similar federal health program.
Possibly due to the criticism of Sebelius’s initial determination on the issue, a short time later the HHS Center for Consumer Information and Insurance Oversight, which oversees insurance-related matters, issued a memo that appeared to contradict Sebelius’s interpretation of the Social Security Act.
The latter development prompted the AIDS organizations and allied groups to send their Dec. 2 letter to Sebelius urging her to hold firm on her initial determination that the insurance exchanges are exempt from the Social Security Act’s ban on drug company subsidies for prescription drug coverage.
The D.C.-based national group Health HIV participated in efforts to recruit groups to sign the letter.
According to the Wall Street Journal, drug companies spent about $4 billion on co-payment assistance programs for patients with HIV and other illnesses in 2011. The paper cited experts in the pharmaceutical industry that said the assistance programs often lowered a patient’s co-payment from $250 or more per month to just $5 per month for a prescription drug.
Critics of the program say the subsidies often are given for brand-name drugs and encourage patients not to request cheaper generic drugs. This forces insurance companies to pay more for the name-brand drugs, resulting in higher premiums for everyone in the long run, critics have said.
But in their letter to Sebelius, the AIDS organization officials said most AIDS-related drugs needed by people with HIV are not available in generic forms.
“[W]e urge you to consider the unintended consequences of suddenly removing industry-provided out-of-pocket assistance for brand-name drugs without generic equivalents from the patchwork of programs that so many people with serious and chronic conditions rely on,” the joint letter says.
“It could potentially threaten access to lifesaving medications for thousands of people living with HIV; bar millions of people with hepatitis C from benefiting from the new short-course curative treatment combinations; and keep countless people with cancer and other debilitating and life-threatening illnesses from the treatment they need to stay alive,” the letter says.
“We fear this will be a major setback to the goals of the Affordable Care Act,” it says.
HHS spokesperson Mike Robinson said he would make inquiries in response to a request by the Blade for Sebelius’s response to the joint letter by the AIDS organizations, but he did not immediately respond.
“We’re still waiting for a clear determination from HHS,” said Carl Schmid, deputy director of the AIDS Institute, one of the groups that signed on to the letter to Sebelius. “There have been some mixed signals from the department.”
Schmid said the drug company assistance programs seek to help people with HIV who are not eligible for the federal-state AIDS Drug Assistance Program known as ADAP, which provides AIDS drugs to low-income people who don’t have insurance.
Although people being helped by the pharmaceutical company assistance programs often are employed and have moderate incomes, the high cost of prescription drug co-payments could be devastating to them, Schmid and others familiar with the programs said. Some people with HIV need more than one drug for their treatment regimen, and co-payments under their insurance plans often result in co-payments of more than $200 per drug per month.
Dan Mendelson, president of the heath care consulting firm Avalere Health LLC told the Wall Street Journal that the average “silver” health insurance plan under the Obamacare exchanges has a required annual deductible of $2,500. He told the WSJ that the average deductible for the “bronze” plans under the exchanges, which are said to be the cheapest plans, is $5,000.
Schmid said these costs are often prohibitive for patients with modest incomes. The elimination of the drug company assistance programs under the Affordable Care Act’s exchanges would create a serious burden on HIV patients and others who now rely on the assistance programs.
Federal Government
US Census Bureau testing survey on LGBTQ households
Agency proposing questions about sexual orientation and gender identity
The U.S. Census Bureau is seeking public comment on a proposed test of sexual orientation and gender identity questions on the American Community Survey. The test would begin this summer and continue into next year.
The Census Bureau published the request as a Federal Register notice. In its press release the agency noted that the ACS is an ongoing survey that collects detailed housing and socioeconomic data. It allows the Census Bureau to provide timely and relevant housing and socioeconomic statistics, even for low levels of geography.
As part of the process for adding new questions to the ACS, the Census Bureau tests potential questions to evaluate the quality of the data collected.
The Census Bureau proposes testing questions about sexual orientation and gender identity to meet the needs of other federal agencies that have expressed interest in or have identified legal uses for the information, such as enforcing civil rights and equal employment measures.
The test would follow the protocols of the actual ACS — with one person asked to respond to the survey on behalf of the entire household. These particular questions are asked about people 15 years of age or older. Households are invited to respond to the survey online, by paper questionnaire or by phone.
The current Federal Register notice gives the public a final opportunity to provide feedback before the Census Bureau submits its recommendations to the Office of Management and Budget for approval. The public may provide feedback through May 30 online.
The White House
Judy Shepard to receive Presidential Medal of Freedom
Nancy Pelosi is also among this year’s honorees
Beloved LGBTQ advocate Judy Shepard is among the 19 honorees who will receive the Presidential Medal of Freedom, the highest civilian award in the U.S., the White House announced on Friday.
The mother of Matthew Shepard, who was killed in 1998 in the country’s most notorious anti-gay hate crime, she co-founded the Matthew Shepard Foundation with her husband Dennis to raise awareness about anti-LGBTQ violence.
The organization runs education, outreach, and advocacy programs, many focused on schools.
In a statement shared via the Human Rights Campaign, Shepard said, “This unexpected honor has been very humbling for me, Dennis, and our family. What makes us proud is knowing our President and our nation share our lifelong commitment to making this world a safer, more loving, more respectful, and more peaceful place for everyone.
“I am grateful to everyone whose love and support for our work through the years has sustained me.
“If I had the power to change one thing, I can only dream of the example that Matt’s life and purpose would have shown, had he lived. This honor reminds the world that his life, and every life, is precious.”
Shepard was instrumental in working with then-President Barack Obama for passage of the landmark Matthew Shepard and James Byrd Jr. Hate Crimes Prevention Act in 2009, which was led in the House by then-Speaker Nancy Pelosi (D-Calif.), who will also be honored with a Presidential Medal of Freedom during the ceremony on Friday.
Also in 2009, Shepard published a memoir, “The Meaning of Matthew: My Son’s Murder in Laramie, and a World Transformed,” and was honored with the Black Tie Dinner Elizabeth Birch Equality Award.
“Judy Shepard has been a champion for equality and President Biden’s choice to honor her with the Presidential Medal of Freedom is a testament to what she’s done to be a force of good in the world,” HRC President Kelley Robinson said in a statement.
“A mother who turned unspeakable grief over the loss of her son into a decades-long fight against anti-LGBTQ+ hatred and violence, Judy continues to make a lasting impact in the lives of the LGBTQ+ community,” she said.
“It is because of her advocacy that the first federal hate crimes legislation became law and that countless life-saving trainings, resources and conversations about equality and acceptance are provided each year by the Matthew Shepard Foundation,” Robinson said. “We are honored that Judy is a member of the HRC family and know that her work to create a more inclusive and just world will only continue.”
Other awardees who will be honored by the White House this year are: Actor Michelle Yeoh, entrepreneur and former New York Mayor Michael Bloomberg, Jesuit Catholic priest Gregory Boyle, Assistant House Democratic Leader Jim Clyburn (D-S.C.), former Labor and Education Secretary and former U.S. Sen. Elizabeth Dole (R-N.C.), journalist and former daytime talkshow host Phil Donahue, World War II veteran and civil rights activist Medgar Evers (posthumous), former Vice President Al Gore, civil rights activist and lawyer Clarence B. Jones, former Secretary of State and U.S. Sen. John Kerry (D-Mass.), former U.S. Sen. Frank Lautenberg (D-N.J.) (posthumous), Olympic swimmer Katie Ledecky, educator and activist Opal Lee, astronaut and former director of NASA’s Johnson Space Center Ellen Ochoa, astronomer Jane Rigby, United Farm Workers President Teresa Romero, and Olympic athlete Jim Thorpe (posthumous).
National
United Methodist Church removes 40-year ban on gay clergy
Delegates also voted for other LGBTQ-inclusive measures
The United Methodist Church on Wednesday removed a ban on gay clergy that was in place for more than 40 years, voting to also allow LGBTQ weddings and end prohibitions on the use of United Methodist funds to “promote acceptance of homosexuality.”
Overturning the policy forbidding the church from ordaining “self-avowed practicing homosexuals” effectively formalized a practice that had caused an estimated quarter of U.S. congregations to leave the church.
The New York Times notes additional votes “affirming L.G.B.T.Q. inclusion in the church are expected before the meeting adjourns on Friday.” Wednesday’s measures were passed overwhelmingly and without debate. Delegates met in Charlotte, N.C.
According to the church’s General Council on Finance and Administration, there were 5,424,175 members in the U.S. in 2022 with an estimated global membership approaching 10 million.
The Times notes that other matters of business last week included a “regionalization” plan, which gave autonomy to different regions such that they can establish their own rules on matters including issues of sexuality — about which international factions are likelier to have more conservative views.
Rev. Kipp Nelson of St. Johns’s on the Lake Methodist Church in Miami shared a statement praising the new developments:
“It is a glorious day in the United Methodist Church. As a worldwide denomination, we have now publicly proclaimed the boundless love of God and finally slung open the doors of our church so that all people, no matter their identities or orientations, may pursue the calling of their hearts.
“Truly, all are loved and belong here among us. I am honored to serve as a pastor in the United Methodist Church for such a time as this, for our future is bright and filled with hope. Praise be, praise be.”
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