A New Day for People with Sickle Cell Disease [Updated]

By Louis Conte, Health Freedom Editor, The Kennedy Beacon

Over 100,000 Americans, mostly of African descent, have sickle cell disease, a genetic blood disorder characterized by abnormally shaped red blood cells that are not able to efficiently carry oxygen through the body.

Despite recent innovations in treating the sometimes fatal disease, costs can run into the millions, ruling out such treatments for the vast majority of children and adults who need it most.

Health and Human Services Secretary, Robert F. Kennedy Jr., wants to change that by negotiating with drug companies and insurers for lower drug prices. In late April, Kennedy attended the National Conference of Insurance Legislators in Charleston, South Carolina, announcing progress in the fight against sickle cell. When he took the podium, he received a standing ovation.

During his remarks, Kennedy said thirty-five states have opted into the HHS new cell and gene therapy model – aimed to lower healthcare costs for patients with rare diseases such as sickle cell.

Later, he took to Instagram, stating: “In Charleston, I joined @senatortimscott and Jennelle Stephenson to announce a historic step forward in the fight against sickle cell disease. Thanks to a first-of-its-kind partnership between @hhsgov, drugmakers, insurers, providers, and patient advocates, we’re making life-changing gene therapy available to Americans on Medicaid — at low cost, and with the potential to cure. Already, 35 states have opted into this initiative. Our goal: all 50 by the end of the year. Jennelle’s story is proof — this isn’t just about saving money. It’s about saving lives, restoring hope, and letting our children dream again.

According to the National Institutes of Health, Sickle Cell Disease can lead to serious health conditions that may feature the sudden onset of strong episodes of pain, called “sickle cell crisis” and “vaso-occlusive crisis,” which occur due to blocked blood flow and often require medical attention.

People who have sickle cell disease experience other serious health complications, such as chronic pain, stroke, lung and eye problems, infections, and kidney disease.

This video explains sickle cell and describes a young African American woman’s journey with the disease.

Earlier this month, President Trump took to his Truth Social, lambasting Leticia James for dragging her feet on sickle cell, while linking to a Roger Stone Substack on the issue.

During his remarks in Charleston remarks, Kennedy noted that South Carolina, which has a high number of citizens affected by sickle cell disease, has “helped inform the design of our model.”

Kennedy specifically thanked South Carolina Senator Tim Scott for being a “long and loud advocate and champion for people with sickle cell disease.” He also expressed appreciation to other states that have joined the effort. “The success of this model shows that voluntary approaches can work when you have the right partners across the table,” Kennedy said.

One of the right partners is Patrick Girondi, founder of San Rocco Therapeutics, who said his company’s new therapeutic gene therapy will be more effective and significantly less expensive than other therapies currently on the market.

Girondi, whose son has thalassemia, an inherited blood disorder, created Rocco Therapeutics to make treatments for rare diseases more available and less expensive for those afflicted.

“Sickle cell disease is a terrible illness,” Kennedy has said. “I have many friends who have it, and their lives are devastated. They often live in agony.” He noted that the sickle cell community “is looking for options to be empowered to make the best choices possible for their health.”

Now they’re doing so with HHS fully behind them.