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Higher AIDS drug costs under Obamacare?

Sebelius urged to allow drug company subsidies in exchanges

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Kathleen Sebelius, AIDS, HHS, gay news, Washington Blade

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.

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Pennsylvania

Malcolm Kenyatta could become the first LGBTQ statewide elected official in Pa.

State lawmaker a prominent Biden-Harris 2024 reelection campaign surrogate

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President Joe Biden, Malcolm Kenyatta, and Vice President Kamala Harris (Official White House Photo by Adam Schultz)

Following his win in the Democratic primary contest on Wednesday, Pennsylvania state Rep. Malcolm Kenyatta, who is running for auditor general, is positioned to potentially become the first openly LGBTQ elected official serving the commonwealth.

In a statement celebrating his victory, LGBTQ+ Victory Fund President Annise Parker said, “Pennsylvanians trust Malcolm Kenyatta to be their watchdog as auditor general because that’s exactly what he’s been as a legislator.”

“LGBTQ+ Victory Fund is all in for Malcolm, because we know he has the experience to win this race and carry on his fight for students, seniors and workers as Pennsylvania’s auditor general,” she said.

Parker added, “LGBTQ+ Americans are severely underrepresented in public office and the numbers are even worse for Black LGBTQ+ representation. I look forward to doing everything I can to mobilize LGBTQ+ Pennsylvanians and our allies to get out and vote for Malcolm this November so we can make history.” 

In April 2023, Kenyatta was appointed by the White House to serve as director of the Presidential Advisory Commission on Advancing Educational Equity, Excellence and Economic Opportunity for Black Americans.

He has been an active surrogate in the Biden-Harris 2024 reelection campaign.

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The White House

White House debuts action plan targeting pollutants in drinking water

Same-sex couples face higher risk from environmental hazards

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President Joe Biden speaks with reporters following an Earth Day event on April 22, 2024 (Screen capture: Forbes/YouTube)

Headlining an Earth Day event in Northern Virginia’s Prince William Forest on Monday, President Joe Biden announced the disbursement of $7 billion in new grants for solar projects and warned of his Republican opponent’s plans to roll back the progress his administration has made toward addressing the harms of climate change.

The administration has led more than 500 programs geared toward communities most impacted by health and safety hazards like pollution and extreme weather events.

In a statement to the Washington Blade on Wednesday, Brenda Mallory, chair of the White House Council on Environmental Quality, said, “President Biden is leading the most ambitious climate, conservation, and environmental justice agenda in history — and that means working toward a future where all people can breathe clean air, drink clean water, and live in a healthy community.”

“This Earth Week, the Biden-Harris Administration announced $7 billion in solar energy projects for over 900,000 households in disadvantaged communities while creating hundreds of thousands of clean energy jobs, which are being made more accessible by the American Climate Corps,” she said. “President Biden is delivering on his promise to help protect all communities from the impacts of climate change — including the LGBTQI+ community — and that we leave no community behind as we build an equitable and inclusive clean energy economy for all.”

Recent milestones in the administration’s climate policies include the U.S. Environmental Protection Agency’s issuance on April 10 of legally enforceable standard for detecting and treating drinking water contaminated with polyfluoroalkyl substances.

“This rule sets health safeguards and will require public water systems to monitor and reduce the levels of PFAS in our nation’s drinking water, and notify the public of any exceedances of those levels,” according to a White House fact sheet. “The rule sets drinking water limits for five individual PFAS, including the most frequently found PFOA and PFOS.”

The move is expected to protect 100 million Americans from exposure to the “forever chemicals,” which have been linked to severe health problems including cancers, liver and heart damage, and developmental impacts in children.

An interactive dashboard from the United States Geological Survey shows the concentrations of polyfluoroalkyl substances in tapwater are highest in urban areas with dense populations, including cities like New York and Los Angeles.

During Biden’s tenure, the federal government has launched more than 500 programs that are geared toward investing in the communities most impacted by climate change, whether the harms may arise from chemical pollutants, extreme weather events, or other causes.

New research by the Williams Institute at the UCLA School of Law found that because LGBTQ Americans are likelier to live in coastal areas and densely populated cities, households with same-sex couples are likelier to experience the adverse effects of climate change.

The report notes that previous research, including a study that used “national Census data on same-sex households by census tract combined with data on hazardous air pollutants (HAPs) from the National Air Toxics Assessment” to model “the relationship between same-sex households and risk of cancer and respiratory illness” found “that higher prevalence of same-sex households is associated with higher risks for these diseases.”

“Climate change action plans at federal, state, and local levels, including disaster preparedness, response, and recovery plans, must be inclusive and address the specific needs and vulnerabilities facing LGBT people,” the Williams Institute wrote.

With respect to polyfluoroalkyl substances, the EPA’s adoption of new standards follows other federal actions undertaken during the Biden-Harris administration to protect firefighters and healthcare workers, test for and clean up pollution, and phase out or reduce use of the chemicals in fire suppressants, food packaging, and federal procurement.

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Maine

Maine governor signs transgender, abortion sanctuary bill into law

Bomb threats made against lawmakers before measure’s passage

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Maine Gov. Janet Mills congratulates members of Maine Women's Basketball. In March the team won the America East championship. (Photo courtesy of Mills’s office)

BY ERIN REED | On Tuesday, Maine Gov. Janet Mills signed LD 227, a sanctuary bill that protects transgender and abortion providers and patients from out-of-state prosecution, into law.

With this action, Maine becomes the 16th state to explicitly protect trans and abortion care in state law from prosecution. This follows several bomb threats targeting state legislators after social media attacks from far-right anti-trans influencers such as Riley Gaines and Chaya Raichik of Libs of TikTok.

An earlier version of the bill failed in committee after similar attacks in January. Undeterred, Democrats reconvened and added additional protections to the bill before it was passed into law.

The law is extensive. It asserts that gender-affirming care and reproductive health care are “legal rights” in Maine. It states that criminal and civil actions against providers and patients are not enforceable if the provision or access to that care occurred within Maine’s borders, asserting jurisdiction over those matters.

It bars cooperation with out-of-state subpoenas and arrest warrants for gender-affirming care and abortion that happen within the state. It even protects doctors who provide gender-affirming care and abortion from certain adverse actions by medical boards, malpractice insurance, and other regulating entities, shielding those providers from attempts to economically harm them through out-of-state legislation designed to dissuade them from providing care.

You can see the findings section of the bill here:

The bill also explicitly enshrines the World Professional Association of Transgender Health’s Standards of Care, which have been the target of right-wing disinformation campaigns, into state law for the coverage of trans healthcare:

The bill is said to be necessary due to attempts to prosecute doctors and seek information from patients across state lines. In recent months, attorneys general in other states have attempted to obtain health care data on trans patients who traveled to obtain care. According to the U.S. Senate Finance Committee, attorneys general in Tennessee, Indiana, Missouri, and Texas attempted to obtain detailed medical records “to terrorize transgender teens in their states … opening the door to criminalizing women’s private reproductive health care choices.”

The most blatant of these attempts was from the attorney general of Texas, who, according to the Senate Finance Committee, “sent demands to at least two non-Texas entities.” One of these entities was Seattle Children’s Hospital, which received a letter threatening administrators with arrest unless they sent data on Texas patients traveling to Seattle to obtain gender-affirming care.

Seattle Children’s Hospital settled that case out of court this week, agreeing to withdraw its Texas business registration in return for Texas dropping its investigation. This likely will have no impact on Seattle Children’s Hospital, which has stated it did not treat any youth via telemedicine or in person in Texas; the hospital will be able to continue treating Texas youth who travel outside of Texas to obtain their care. That settlement was likely compelling due to a nearly identical law in Washington that barred out-of-state investigations on trans care obtained solely in the state of Washington.

The bill has faced a rocky road to passage. A similar bill was debated in January, but after coming under intense attack from anti-trans activists who misleadingly called it a “transgender trafficking bill,” the bill was voluntarily withdrawn by its sponsor.

When LD 227 was introduced, it faced even more attacks from Gaines and Libs of TikTok. These attacks were followed by bomb threats that forced the evacuation of the legislature, promising “death to pedophiles” and stating that a bomb would detonate within a few hours in the capitol building.

Despite these threats, legislators strengthened both the abortion and gender-affirming care provisions and pressed forward, passing the bill into law. Provisions found in the new bill include protecting people who “aid and assist” gender-affirming care and abortion, protections against court orders from other states for care obtained in Maine, and even protections against adverse actions by health insurance and malpractice insurance providers, which have been recent targets of out-of-state legislation aimed at financially discouraging doctors from providing gender-affirming care and abortion care even in states where it is legal.

See a few of the extensive health insurance and malpractice provisions here:

Speaking about the bill, Gia Drew, executive director of Equality Maine, said in a statement, “We are thrilled to see LD 227, the shield bill, be signed into law by Gov. Mills. Thanks to our pro equality and pro reproductive choice elected officials who refused to back down in the face of disinformation. This bill couldn’t come into effect at a better time, as more than 40 percent of states across the country have either banned or attempted to block access to reproductive care, which includes abortions, as well as transgender healthcare for minors. Thanks to our coalition partners who worked tirelessly to phone bank, lobby, and get this bill over the finish line to protect community health.” 

Related

Destie Hohman Sprague of the Maine Women’s Lobby celebrated the passage of the bill despite threats of violence, saying in a statement, “A gender-just Maine ensures that all Mainers have access to quality health care that supports their mental and physical wellbeing and bodily autonomy, including comprehensive reproductive and gender-affirming care. We celebrate the passage of LD 227, which helps us meet that goal. Still, the patterns of violence and disinformation ahead of the vote reflected the growing connections between misogyny, extremism, and anti-democratic threats and actions. We must continue to advocate for policies that protect bodily autonomy, and push back against extremist rhetoric that threatens our states’ rights and our citizens’ freedoms.”

The decision to pass the legislation comes as the Biden administration released updated HIPAA protections that protect “reproductive health care” from out-of-state prosecutions and investigations.

Although the definition of “reproductive health care” is broad in the new HIPAA regulations, it is uncertain whether they will include gender-affirming care. For at least 16 states, though, gender-affirming care is now explicitly protected by state law and shielded from out-of-state legislation, providing trans people and those seeking abortions with protections as the fight increasingly crosses state lines.

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Erin Reed is a transgender woman (she/her pronouns) and researcher who tracks anti-LGBTQ+ legislation around the world and helps people become better advocates for their queer family, friends, colleagues, and community. Reed also is a social media consultant and public speaker.

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The preceding article was first published at Erin In The Morning and is republished with permission.

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