It's National Healthcare Decisions Day, which highlights the importance of planning for the future when it comes to medical choices. In particular, the organization Compassion & Choices is focused on end of life decisions and ensuring that people discuss advance care planning with their loved ones and health-care team.
Meagan Williams, clinical engagement and education program manager with Compassion & Choices, stressed that planning is critical.
"Talking about your end of life plans, your advance care plans, you're giving your loved ones and the people around you an opportunity to feel confident that they are following your wishes as they continue to support you through your journey," she said.
Oregon is one of ten states where medical aid in dying is legal.
Planning for health care as people age is likely to become more important in the coming decades. The number of people with Alzheimer's disease, the most common form of dementia, is projected to double from seven million today to 14 million by 2050.
Jessica Empeño, national director of clinical engagement and education with Compassion & Choices, said it can be hard to make health decisions once the disease has progressed.
"Because dementia has this characteristic where at some point an individual will lose their ability to communicate their wants, their needs, their wishes, making those decisions and completing the important legal documents in advance of that cannot be underscored enough," Empeño explained.
The dementia values and priorities tool is on Compassion & Choices' website. Empeño added this can be useful to help people communicate their wishes to loved ones.
"What the tool does is, it inspires people to think about what matters to them, what their values are in certain circumstances and changes that the disease will bring," she said.
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An Alabama Senate Judiciary Committee has unanimously approved a bill that would exempt nursing mothers from jury duty.
The proposal comes after an Alabama mother, Kandace Brown, shared her difficult experience with a Jefferson County court. Brown said that, despite following all the necessary steps to request an exemption, her plea was denied.
"I called, emailed and turned in the appropriate forms to be excused and I was denied. I had to report for jury duty with my infant and we were treated poorly. DHR [the Department of Human Resources] was even threatened, and we were made to stay for almost three hours. I believe we should never have been forced to come. Obviously, the courthouse is no place for a baby," she explained.
Currently, Alabama law allows exemptions from jury duty for extreme physical or financial hardship, incapacity, or public necessity. This bill would add nursing mothers to that list. Last month, the Alabama Supreme Court issued an administrative order affirming that nursing mothers qualify for excusal under the state's judicial code.
Sen. April Weaver, R-Brierfield, a bill sponsor, pointed out that nursing mothers already face significant challenges, and jury duty should not be one of them. She emphasized the need for long-term protections written into law, rather than relying on administrative orders that can be overturned.
"This would allow protection for these nursing mothers, and they will have the affidavit that they bring with them saying that they are a nursing mother," said Weaver. "It does not keep them from being in the jury pool. It just gives them 24 months during that time and then they will be back in after the 24 months."
Weaver amended the bill to be named "Parker's Law" after Brown's child. If passed, nursing mothers seeking exemption would need a signed statement from a health-care provider -- such as a physician, lactation consultant, certified nurse midwife or pediatrician -- confirming they are breastfeeding. The bill now moves forward for further consideration.
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By Rebekah Sager for the Pennsylvania Independent.
Broadcast version by Danielle Smith for Keystone State News Connection reporting for the Pennsylvania Independent-Public News Service Collaboration
On Jan. 23, Sen. Rand Paul of Kentucky introduced a bill called the Defund Planned Parenthood Act, which states, “Notwithstanding any other provision of law, no Federal funds may be made available to Planned Parenthood Federation of America, or to any of its affiliates.”
A press release on Paul’s Senate website links the bill to the “March for Life” event staged by abortion opponents every year in Washington, D.C., and says, “The Defund Planned Parenthood Act would ensure federal tax dollars aren’t going to organizations, like Planned Parenthood, to perform abortions.”
But the reality is that federal funding for abortion has been prohibited by the Hyde Amendment, a restriction included in annual federal spending bills since 1976, except in cases of medical emergencies in which a pregnant woman’s life is at stake.
Instead, what prohibiting federal funding of Planned Parenthood would do is put an end to Medicaid reimbursement to providers of the costs of an array of reproductive health care services for those who wouldn’t otherwise be able to afford them.
Fadia Halma, 55, was just 12 when she found her way to a Planned Parenthood clinic in Bethlehem, Pennsylvania. She told the Pennsylvania Independent that she’d gotten her period at school; her family hadn’t discussed anything related to sex education with her, and not knowing what was happening to her, she believed she was dying.
“I had no idea what was going on,” Halma said. “I just knew I was in a lot of pain, and there was blood, and I was being sent to the nurse’s office.”
She said that after a few hours during which the school tried unsuccessfully to reach her mother, who worked in a factory, a teacher gave her a piece of paper with an address on it and told her to go there for help. Halma said she walked five miles to what turned out to be a Planned Parenthood clinic, where she was given menstrual pads and told what was happening with her body.
“I told them that we didn’t have health insurance. We were very poor and didn’t know how I was going to be able to buy pads. So they gave me, like, six months’ worth of pads and had somebody drive me home because I was so shaken up over it,” Halma said. “It literally had such an impact on my view of the world and helping others that I didn’t want what happened to me to happen to others.”
The health care services offered by Planned Parenthood include screenings for cervical and breast cancer and sexually transmitted infections, prenatal and postpartum care, and education on contraception. The organization reported that its clinics had seen 2.05 million patients in 2022-2023.
Halma said she used Planned Parenthood clinics for her reproductive health care through college and into her late 20s, for everything from birth control to help with recurring urinary tract infections.
Planned Parenthood funding comes from private donations, Medicaid, and federal grants that reimburse clinics for providing services to patients who are unable to pay, the latter through the federal Title X program, established in 1970 to make family planning and reproductive health care accessible.
In addition to Sen. Rand Paul’s bill, which has seven Republican cosponsors, two pending lawsuits pose a threat to the organization.
The U.S. Supreme Court is currently considering Kerr v. Planned Parenthood South Atlantic (now called Medina v. Planned Parenthood), a case on whether South Carolina can end all Medicaid funding to Planned Parenthood. The case was brought by by the Alliance Defending Freedom, an anti-abortion legal group.
“The Kerr case could hobble Planned Parenthood and dramatically reduce access to family planning services in lots of states,” Elizabeth Sepper, a professor at the University of Texas School of Law and a scholar on religious liberty and health law, told Slate.
In a statement, Jenny Black, the president and CEO of Planned Parenthood South Atlantic, said, “This case is politics at its worst: anti-abortion politicians using their power to target Planned Parenthood and block people who use Medicaid as their primary form of insurance from getting essential health care like cancer screenings and birth control.”
In 2023, U.S. District Judge Matthew Kacsmaryk ordered a jury trial for a lawsuit initially filed in 2021 against Planned Parenthood and its Texas affiliates with the claim that the clinics had defrauded the Medicaid system by continuing to bill the state after it made Planned Parenthood ineligible to participate in Medicaid. Texas officials are seeking $1.8 billion in repayment and civil penalties, an amount that could cripple the organization.
After years of fundraising, talking to people about the organization, and organizing volunteer escorts for patients, Halma recently became a Planned Parenthood board member.
Halma said she’s been working to help people understand what rights they have and what legal challenges the organization may face, and making sure that people understand that those facilities are going to stay open for them.
“People don’t realize that all people use Planned Parenthood. It’s not just poor people. They think that we’re offering this to just kids who are having early sex and getting pregnant. That’s not what it’s about at all,” Halma said. “There’s all different age groups that come to Planned Parenthood, all different types of constituencies, white, Black, brown, Asian — there’s many different constituents that actually come to Planned Parenthood and use it. … A woman has the right to have health care. It’s just a basic human right, and they should not have the ability to dictate where we get that health care.”
Rebekah Sager wrote this article for the Pennsylvania Independent.
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The Centers for Disease Control and Prevention report the life-shortening blood disease sickle cell anemia affects about 100,000 Americans, mostly people of color.
And many individuals with the illness do not get the important screenings and treatments.
Sickle cell disease causes normally healthy, round, and flexible blood cells to become 'C' or sickle-shaped and stick to small blood-vessel walls.
This blockage prevents blood and oxygen flow to the arms, legs, and internal organs. Around 1,700 Hoosiers, mostly women of color, are impacted by the disorder.
Lisa Hoffman, grants and team manager with Innovative Hematology, said she would like to see better public awareness about the inherited disease.
"I would like to think it's not an issue about race, but 87% of the people in Indiana that have sickle cell are Black or African American," said Hoffman. "There are other diseases that affect predominantly white folks, and those diseases seem to get a bit more attention."
Patient education is essential for addressing sickle cell anemia complications. The blockages cause repeated episodes of severe pain, organ damage, infections, or sometimes a stroke.
Innovative Hematology indicates that 52% of sickle cell anemia patients in Indiana are female, and 48% are male.
One barrier to care is insufficient or no insurance coverage, which affects disease management. Another is a lack of medical providers with knowledge of detecting the illness. This can lead to a misdiagnosis or prescribing an ineffective treatment plan.
Hoffman said family members in dual roles as caregivers often do not get needed support. And other factors can present additional burdens for a patient.
"If you're a single mom and you have sickle cell disease and you are having a pain crisis and really should go to the hospital," said Hoffman, "you face a lot of barriers - such as, who's going to watch my child? How am I going to get there?"
The Indiana Statehouse hosted 174 attendees for Sickle Cell Advocacy Day last week, to raise the voices of those in the community who are affected by the painful disorder.
Hoffman said she wants legislators to extend health care services beyond age 21 for individuals with this specific condition.
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