Christina Herrin, government relations manager of health policy, interviews Amber Freed, mother, activist, and founder of SLC6A1 Connect. The prevalence of rare diseases in the U.S. is growing. Nearly 1 out of 10 Americans suffer from a rare disease. For the Freed family and Maxwell her son, time is of the essence to find a cure for SLC6A1. The discussion focuses on rare diseases, finding a cure, and obstacles to bringing new cures to market.

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One Mother’s Journey to Save Her Son (Guest: Amber Freed)

The Heartland Institute podcast featuring libertarian and conservative health care scholars who are working to put power back into the hands of patients and doctors, and away from government bureaucrats.

News

Olympian Mary Lou Retton made a stunning revelation when asked why she didn’t have health insurance while she was in intensive care fighting for her life.  “I couldn’t afford it,” Retton told the Today Show on January 8 when she was faced with a life threating pneumonia recently.  Retton’s daughter started a “Go Fund Me” page to help her mother pay for what was likely to be tens of thousands of dollars in hospital bills.    Health Care News managing editor AnneMarie Schieber talked to Kansas State Senator Beverly Gossage as to why Retton may have gone without health insurance. The likely answer is Obamacare, the only option for people without an employer health plan. Gossage discusses what Retton might have paid for an Obamacare plan without subsidies and why there are almost no other options today for middle income people.  She also discusses what Congress needs to do about it. Read more: https://heartlanddailynews.com/2024/02/i-couldnt-afford-it-olympic-champion-mary-lou-retton-on-health-insurance/ PHOTO: ROBIN MARCHANT/GETTY IMAGES NEWS

Obamacare's Olympian Premiums – "I couldn’t afford it," says Mary Lou Retton (Guest: Kansas State Sen. Beverly Gossage)

You see the reports in the news all the time, a patient on life support has given the “gift of life” by donating organs. Few people realize but organ donors needs to be alive to do this.  Hospitals can legally declare people with a brain death diagnosis allowing them to take their vital organs for transplant.  Dr. Heidi Klessig is author of The Brain Death Fallacy.  She discusses whether brain death is irreversible and how the organ transplant business has grown since the decision in 1968 to include brain function in the legal definition of death.   Klessig: “People defined to be brain dead or dead by neurological criteria have beating hearts, digest food, excrete urine, and even gestate pregnancies and deliver healthy babies. These people are not biologically dead, and their spirits have not departed. Brain death is not death. Many people who were diagnosed as being brain dead have recovered. If brain death was real death, people should not recover even once.”   Klessig also discusses the Uniform Declaration of Death Act, and how New Jersey is the only state that allow families to demand treatment for patients declared “brain dead.”  Patients and families can take measures before a crisis to make sure hospitals do not violate their wishes when it comes to life and death issues.  For more information, see respectforhumanlife.org

Are Hospitals Prematurely Ending Life for Organs? – Heidi Klessig, M.D.

In this episode of Health Care News, we delve into the recent revelation by the Food and Drug Administration (FDA) that certain over-the-counter decongestants, specifically those labeled with "PE" (phenylephrine), are no more effective than a placebo. Our guest, Dr. Jeffrey Singer, a practicing surgeon from Phoenix, Arizona, and a senior fellow at the Cato Institute, sheds light on how these medications found their way onto store shelves. Dr. Singer traces the issue back to the Combat Methamphetamine Epidemic Act (CMEA), enacted 18 years ago in response to the methamphetamine crisis. This legislation pushed pseudoephedrine, an effective decongestant, behind the counter, leading drug companies to modify their formulas to include PE for over-the-counter sales. 
Throughout the episode, Dr. Singer discusses several key points:The factors that led the FDA to reconsider its stance on over-the-counter decongestants.An overview of different decongestant drugs and tips for consumers to differentiate them.The process for purchasing pseudoephedrine, the effective decongestant.An exploration of why the FDA initially overlooked the ineffectiveness of PE.The sales strategies of drug manufacturers for OTC decongestants.Evaluating the CMEA's impact on the Meth epidemic.The potential for a class-action lawsuit against this misleading practice.The future: Is there a possibility that Congress will repeal the CMEA?For further insights, don't miss Dr. Singer’s op-ed in Health Care News, linked in the episode description.

Consumers Have Spent Billions on Decongestants that Don’t Work

For years, Medicare has paid hospitals and their affiliates more for services than it has to others. The reasons are complex, but this policy significantly incentivizes hospitals to absorb independent practices, creating “monopolies” that reduce competition and increase prices for everyone. Dr. Richard Kube, M.D., founder and CEO of the Prairie Spine and Pain Institute—an independent practice in Illinois—experiences first-hand how this policy and other top-down government regulations work against patients. Kube, an advocate for “site-neutral” payment, recently discussed this topic in Newsweek.   “Site-neutral payment would end the unfair policies promoting consolidation and encouraging higher prices,” Kube writes. “Such proposals have bipartisan support in Congress. Several congressional committees are currently debating a health reform package, including provisions to establish site neutrality under limited circumstances. This would be an essential first step, one that physicians nationwide hope will soon extend to other services. After all, reimbursing providers equally for the same service is only fair.”   In the podcast, Kube discusses:   - The reasons why Medicare pays more money to hospitals for the same service - Examples of the differences in costs - How this policy leads to increased consolidation in the healthcare industry and raises costs for everyone - The track record of Congress and the administration, including under Trump and Biden, in promoting site-neutral payments - The influence of the hospital lobby and the feasibility of implementing site-neutral payments - Actions the public can take to support the advancement of more free-market policies

The Domino Effect of Medicare Hospital Reimbursements on Soaring Health Costs

For almost 4 weeks, four-year-old Autumn Schall has been virtually trapped at Lucile Packard Children’s Hospital, in Palo Alto, CA against the will of her parents. Today, mother Hope Schacter joins the program to discuss Autumn’s situation.   Autumn was admitted to the teaching hospital for an e-coli infection but within days, she became critically ill, receiving care in the ICU, being given intravenously a cocktail of risky drugs, and eventually put on a ventilator. When the parents questioned the treatment, the hospital reported them to Child Protective Services.  They are working with advocates and a lawyer to have her moved to another hospital where their daughter won’t be viewed as a “case study,” and the family is treated like an ally not an adversary.   Autumn was referred to Lucile Packard Children’s Hospital for a diagnostic work to examine her bowel after a week-long case of diarrhea. Her bowel was normal, but the hospital diagnosed an e-coli condition and wanted to admit her. After the parents agreed, the hospital proceeded with an aggressive treatment plan including powerful drugs such as Lasix, Diarel, and Aminophalen.     “Their protocol was very aggressive. My daughter was never on Tylenol before.  She was never really sick and when they’re throwing all these diuretics at you, and given the side effects these can produce, I just thought it was a lot for her constitution,” said Hope Schacter.   The family has been working with Remnant Nursing advocacy services which has identified multiple ethical and clinical lapses.     Schacter believes the hospital is trying to cover up clinical errors at the beginning of care that damaged her daughter’s kidneys and caused her to have a seizure.  They complied with all treatment recommendations, even an MRI, which required intubation. Autumn has also had to undergo a blood transfusion. There was a hearing involving the CPS complaint.  The hospital is trying to get the parents to sign off on all intervention deemed “emergency,” but the parents say it has been vaguely defined.       Related Health Care News articles on patient advocacy in hospitals:   Minnesota Legislature Considers ‘Trusted Doctor’ Bill, May 3, 2023   Down Syndrome Patient’s Family Sues Hospital for Do Not Resuscitate Order, June 20, 2023   Judge Plans Three Week Jury Trial in Do Not Resuscitate Case, August 1, 2023   Patient Takes Hospital to Court for Life-Saving COVID -19 Treatment, Feb. 12, 2021   Ivermectin obstacles during COVID

One Mother’s Journey to Save Her Son (Guest: Amber Freed)

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