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.
Tennessee
Tenn. lawmakers pass transgender “watch list” bill
State Senate to consider measure on Wednesday
The Tennessee House of Representatives passed a bill last week to create a transgender “watch list” that also pushes detransition medical treatment. The state Senate will consider it on Wednesday.
House Bill 754/State Bill 676 has been deemed “ugly” by LGBTQ advocates and criticized by healthcare information litigators as a major privacy concern.
The bill would require “gender clinics accepting funds from this state to perform gender transition procedures to also perform detransition procedures; requires insurance entities providing coverage of gender transition procedures to also cover detransition procedures; requires certain gender clinics and insurance entities to report information regarding detransition procedures to the department of health.”
It would require that any gender-affirming care-providing clinics share the date, age, and sex of patients; any drugs prescribed (dosage, frequency, duration, and method administered); the state and county; the name, contact information, and medical specialty of the healthcare professional who prescribed the treatment; and any past medical history related to “neurological, behavioral, or mental health conditions.” It would also mandate additional information if surgical intervention is prescribed, including details on which healthcare professional made a referral and when.
HB 0754 would also require the state to produce a “comprehensive annual statistical report,” with all collected data shared with the heads of the legislature and the legislative librarian, and eventually published online for public access.
The bill also reframes detransitioning as a major focus of gender-affirming healthcare — despite studies showing that the number of trans people who detransition is statistically quite low, around 13 percent, and is often the result of external pressures (such as discrimination or family) rather than an issue with their gender identity.
This legislation stands in sharp contrast to federal protections restricting what healthcare information can be shared. In 1996, Congress passed the Health Insurance Portability and Accountability Act, or HIPAA, requiring protections for all “individually identifiable health information,” including medical records, conversations, billing information, and other patient data.
Margaret Riley, professor of law, public health sciences, and public policy at the University of Virginia, has written about similar efforts at the federal level, noting the Trump-Vance administration’s push to subpoena multiple hospitals’ records of gender-affirming care for trans patients despite no claims — or proof — that a crime was committed.
It has “sown fear and concern, both among people whose information is sought and among the doctors and other providers who offer such care. Some health providers have reportedly decided to no longer provide gender-affirming care to minors as a result of the inquiries, even in states where that care is legal.” She wrote in an article on the Conversation, where she goes further, pointing out that the push, mostly from conservative members of the government, are pushing extracting this private information “while giving no inkling of any alleged crimes that may have been committed.”
State Rep. Jeremy Faison (R-Cosby), the bill’s sponsor, said in a press conference two weeks ago that he has met dozens of individuals who sought to transition genders and ultimately detransitioned. In committee, an individual testified in support of the bill, claiming that while insurance paid for gender-affirming care, detransition care was not covered.
“I believe that we as a society are going to look back on this time that really burst out in 2014 and think, ‘Dear God, What were we thinking? This was as dumb as frontal lobotomies,’” Faison said of gender-affirming care. “I think we’re going to look back on society one day and think that.”
Jennifer Levi, GLAD Law’s senior director of Transgender and Queer Rights, shared with PBS last year that legislation like this changes the entire concept of HIPAA rights for trans Americans in ways that are invasive and unnecessary.
“It turns doctor-patient confidentiality into government surveillance,” Levi said, later emphasizing this will cause fewer people to seek out the care that they need. “It’s chilling.”
The Washington Blade reached out to the American Civil Liberties Union of Tennessee, which shared this statement from Executive Director Miriam Nemeth:
“HB 754/SB 676 continues the ugly legacy of Tennessee legislators’ attacks on the lives of transgender Tennesseans. Most Tennesseans, regardless of political views, oppose government databases tracking medical decisions made between patients and their doctors. The same should be true here. The state does not threaten to end the livelihood of doctors and fine them $150,000 for safeguarding the sensitive information of people with diabetes, depression, cancer, or other conditions. Trans people and intersex people deserve the same safety, privacy, and equal treatment under the law as everyone else.”
National
Glisten’s 30th annual Day of Silence to take place April 10
Campaign began as student-led protests against anti-LGBTQ bullying, discrimination
Glisten’s 30th annual Day of Silence will take place on April 10.
The annual Day of Silence began as a student-led protest in response to bullying and discrimination that LGBTQ students face. It is now a national campaign for the LGBTQ community and their allies to come together for LGBTQ youth.
It takes place annually and has multiple ways for supporters to get involved in the movement.
Glisten, originally GLSEN, champions LGBTQ issues in schools, grades K-12. Glisten’s mission is to create more inclusive and accepting environments for LGBTQ students through curriculum, supportive measures, education campaigns, and engagement, such as the Day of Silence.
There are three main ways for the community to get involved in the Day of Silence.
Glisten has a Day of Silence frame, a series of pictures used as profile photos across social media that feature individuals holding signs. The signs allow for personalization, by providing a space to put the individual’s name, followed by filling in the prompt “ … and I am ENDING the silence by…”
Participants are encouraged to post the photo on social media and use it as a profile picture. The templates can be found on Google Drive through this link.
Using #DayOfSilence and #NSCS, as well as tagging Glisten’s official Page @glistencommunity, is another way to participate in the Day of Silence.
Glisten also encourages participants to tag creators, friends, family and use a call to action in their caption, to call attention to the facts and stories behind the Day of Silence.
“Today’s administration in the U.S. wants us to stay silent, submit to their biased and hurtful conformity, and stop fighting for our right to be authentically ourselves,” said Glisten CEO Melanie Willingham-Jaggers. “We urge supporters to use their social platforms and check in with local chapters to be boots on the ground to help LGBTQ+ students feel seen, heard, supported, and less alone. By participating in the ‘Day of Silence,’ you are showing solidarity with young people as they navigate identity, safety, and belonging. Our voices matter.”
South Carolina
Man faces first S.C. ‘hate intimidation’ charge
Timothy Truett allegedly shot at gay club in Myrtle Beach on April 1
A South Carolina man remains in custody on a more than $300,000 bond after he allegedly opened fire at a Myrtle Beach nightclub on April 1, according to WMBF.
Reports say 37-year-old Timothy James Truett Jr., of Clover, S.C., was detained by the Myrtle Beach Police Department after the April 1 incident outside Pulse Ultra Club. He was later arrested and charged with possession of a weapon during a violent crime, discharging a firearm into a dwelling, discharging a firearm within city limits, malicious injury to real property valued over $5,000, and assault or intimidation due to political opinions or the exercise of civil rights.
At 10:57 a.m. on April 1, officers responded to a call about a possible shooting at Pulse Ultra Club, located in the 2700 block of South Kings Highway.
In an affidavit released later, the club’s owner, Ken Phillips, said he was doing paperwork that morning when he heard “five or six” gunshots. He went outside and found a window and the windshield of his SUV shattered by bullets. An SUV with blue plastic covering one window was left at the scene.
Police later reviewed footage that showed a silver vehicle stopping in the middle of the road. The video appeared to capture muzzle flashes coming from the passenger-side window.
According to the affidavit, an officer later pulled over a vehicle driven by Truett and found spent shell casings in the back seat, along with a gun.
Documents do not detail why Truett was ultimately charged under the state law covering assault or intimidation tied to political opinions or the exercise of civil rights.
As of April 1, records show Truett is being held in Horry County on a combined bond of more than $312,000.
WMBF spoke with Phillips after the incident and asked whether there was any prior conflict that might have led to the shooting.
“I don’t know if it’s personal, I don’t know if it’s related to being gay, I don’t know if it’s related to the bar issues,” Phillips told WMBF. “Anybody with a mindset of pulling out a weapon in broad daylight is not right.”
“My primary concern has and always will be the safety of my community and my customers,” he added. “It’s given me great concern … as to how far people will go.”
WMBF also spoke with Adam Hayes, vice chair of Myrtle Beach’s Human Rights Coalition, who was involved in pushing for the ordinance. He said that while the incident itself is troubling, it shows the policy is being put to use.
The ordinance is intended to deter “crimes that are motivated by bias or hate towards any person or persons, in whole or in part, because of the actual or perceived” identity, in the absence of a statewide hate crime law.
“It’s nice to see that something we put into policy is not just a piece of paper, that it’s actually being used,” said Hayes.
He said the shooting underscores the need for a statewide hate crime law in South Carolina and added that the incident has left the local LGBTQ community shaken.
South Carolina and Wyoming are the only two states in the U.S. without a comprehensive statewide hate crime law.
Truett remains in jail as of publication.
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