HB701

Please Support H B 701 - Legislation to Advance Life-Affirming Care in the Granite State! H B 701 is an important bill that will make New Hampshire the best jurisdiction in the country for clinical trials and right-to-try for patients with life-threatening illnesses. H B 701 seeks to expand and reinforce New Hampshire's pre-existing Right to Try law. Rather than shutting doors to possible cures, the government should support patients who are fighting for their lives with access to potentially life-saving experimental treatments! Thank you! Kelly A. Cataluna 23 Jeremy Pl., Nashua, NH 03064-1179 Jtkaemst@gmail.com (603)320-1773

Please save live and set an example for the rest of the US at a time we need hope and positive efforts for all citizens. Thank you.

Patients should have the right to try any options for which they understand the risk. All medicines and therapies have risk, but few are as dangerous as doing nothing in the face of a terminal diagnosis. "Protecting" citizens from the dangers associated with potential cures is meaningless it ensures their deaths.

Against diseases as fatal as cancer, it’s tragic and insane to not allow patients to try new treatments! What is there to lose for a patient with an already fatal diagnosis? Even if experimental drugs don’t work, the hope created by allowing patients to try can really help.

My name is Hannah Lowe Corman, and I am here to enter my testimony of my family’s story as it relates to HB701. For families like mine who are facing rare diseases with no treatment or cure, this is an issue we encounter daily. I want to share with you the story of my son, Austin, and how our journey has led us to our own efforts to raise awareness about the urgent need to open new treatment pathways, allowing patients to access investigational treatments that are individualized just for them. Austin was born in 2019, and as far as we knew, he was a typical little baby. But when he stopped feeding and gaining weight, and was no longer hitting his developmental milestones of a 5-month old, he was admitted to a local hospital which, fortunately, is near our home. After weeks of tests, we received the devastating news that Austin had a rare disease called L- CMD, a congenital muscular dystrophy. The disease is so rare that the hospital had never seen a case, and, at that time, there were only 50 documented cases in the world. There was no treatment, and there was no cure. In an instant, the life we thought we might enjoy and hopes for our baby boy were shattered. We were told to take Austin home, love him, and cherish the time we had left with him. But we refused to give up hope. After hundreds of hours of Zoom calls, reading medical articles, meeting with medical experts and sharing conversations with other families facing the disease, we have discovered that there is something we can do. We are now collaborating with two research institutions to create a gene therapy for L-CMD. The technology is there, it just needs to be mapped to the gene that commonly affects our condition. We are now in a race against time to continue to raise money and conduct the research. This is where you can help families like ours. New Hampshire is uniquely poised in proximity to some of the world’s leading facilities and researchers, but the current regulatory framework for developing new medical treatments is slow and cumbersome, which is not acceptable for families like mine who are facing rare diseases with no treatment or cure. Although it is now federal law that patients have a right to seek these, New Hampshire’s state laws must be changed to better accommodate custom treatments for these devastating illnesses that we battle day in and day out. We need laws that would allow medical treatments to be developed faster, with appropriate safety measures, to make it legal to seek these individualized treatments. We appreciate that clinicians may be uneasy treating children with newly developed therapies, however we understand that if we do nothing, our children will inevitably die. Because our disease has such a small patient population, we can’t wait for clinical trials which, even if they do happen, are more than a decade away. Pharmaceutical and biotech firms are typically not interested in treatments where large-scale commercialization is unlikely, so it falls to families like ours to push research and innovation forward. We need your help to make this Herculean task more attainable. For any of you who are parents, you would do anything for your children. That is what we are doing, too. Our families and nonprofits are scraping together the money and making breakthroughs happen out of pure grit, determination, and love, but we need your help to put this money to use. We are not asking for a handout. We are asking for laws that would allow medical treatments to be developed faster, with appropriate safety and efficacy measures, to give hope to families like ours. Please help us in our fight to find a cure for Austin, other L-CMD patients, and the millions more with other rare diseases. Co-signed below are parents of children with other rare diseases for which there are currently no treatments, but who are also racing against the clock to develop and discover new therapies to help their kids and save their lives before it’s too late. Thank you for your consideration of this important reform. Thank you, Hannah Lowe Corman

I am wife, mother of 4, daughter to parents who have passed away from 2 types of cancers, and daughter-in-law to parents who survived 2 different types of cancers. It is imperative that we keep the option to research and obtain healthcare options/medicines/treatments for the patient and their doctors. If in a life threatening situation, I would want the option to choose to obtain non-FDA approved methods, if research was completed that those methods would be effective in the treatment of my illness. I support BH 701 and urge you to vote in support of this bill. Thank you.

Terminally ill patients, such as Jake Seliger of Arizona, deserve every opportunity to receive and contribute to research on experimental therapies—just as we all do, knowing that one day, we too may face a terminal diagnosis.

My brother, Jake Seliger, recently passed away after a courageous battle with squamous cell carcinoma. His experience highlights the urgent need for legislation like HB701, which would expand access to investigational treatments for terminally ill patients. Jake was diagnosed with squamous cell carcinoma of the tongue in September of 2022. Despite undergoing surgery, radiation, and another extensive surgery which resulted in the removal of his tongue and the inability to swallow solid foods, his cancer aggressively returned. In his own words, “Monday I’m starting chemotherapy, but that’s almost certainly going to fail, because a CT scan shows four to six new gross tumors, four in my neck and two, possibly, in my lungs.” Jake’s hope lay in emerging mRNA tumor vaccines, a promising treatment for head and neck squamous cell carcinomas. However, the slow pace of FDA approvals meant that these potentially life-saving options were largely inaccessible to him. He desperately sought enrollment in clinical trials, but his rapidly progressing cancer left him little time. He articulated his frustration with the FDA's cautious approach, citing the "invisible graveyard" of patients who die while waiting for potentially effective treatments. He pointed to historical examples of bureaucratic delays, where fear of potential risks outweighed the immediate needs of dying patients. Jake's plea was simple: "We need to have a much stronger 'right to try' presumption: 'When Dying Patients Want Unproven Drugs,' we should let those patients try." He argued that terminally ill patients, facing imminent death, should have the freedom to explore all available options, even those still under investigation. As he stated, "They are risking essentially nothing." My brother’s story is not unique. Many patients facing terminal illnesses are denied access to potentially life-saving treatments due to regulatory delays. HB701 would provide these patients with the opportunity to make informed decisions about their own care, allowing them to pursue investigational treatments when all other options have been exhausted. Jake’s final message, “Goodbye, world,” was a poignant reminder of the precious time lost due to bureaucratic hurdles. His death underscores the urgent need for legislative action to ensure that patients have the right to try potentially life-saving treatments. I urge the committee to support HB701 and give terminally ill patients like my brother a fighting chance.

On behalf of my childhood friend Jake Seliger, who lobby’d for change up until his final moments and who never got to meet his daughter, Athena. Please consider this bill for all future Jake’s and Athena’s.

I'm two classes from earning a Masters in Translational Pharmacology, Promoting tele-screening of potential subjects for studies would remove a huge barrier to drug testing. Sick patients understandably can't easily travel long distances without hardship just to find out whether they can participate in a study. This bill would promote both access for patients and would also help the United States stay on the cutting edge of drug development, which immensely benefits future patients.

I fully support this bill and encourage you to also support and vote in favor of what Bess Stillman has advocated for here. We must do better for people who are terminally ill and willing to both contribute to medicine development and possibly save their own life by making it easier for them not harder. Thank you.

As the parent of an adult who faced obstacles in accessing a clinical trial that could have prolonged her much loved life, I support making it as easy as possible for patients to try potentially life-saving treatments. The anguish is unbearable.

My dad is undergoing cancer treatment for the second time in the past year. The chemo has left him unable to think, the radiation has left him in pain, and he is barely able to get from bed to his recliner every morning, let alone doctor appointment to sign paper that can be done virtually. He may be one of many that isn’t a Keytruda responder, so giving him, and others like him a choice is vitally important.

Please help make access to clinical trials easier for terminally ill patients. This will help save not only their lives but the lives of those who benefit from the results of these vital drug trials.

I previously worked in the oncology clinic at Dartmouth-Hitchcock, and I saw the value of clinic trials for patients diagnosed with terminal cancer who had failed other treatments. Many of these patients were sent to Boston for these experimental treatments. I believe it would be a source of consolation and hope to New Hampshire citizens and their families who are going through difficult, life-threatening illnesses to have increased access to experimental treatments, allowing them to stay close to home and family while they undergo these sometimes difficult treatments during a vulnerable time.

This an important bill that will make New Hampshire a haven for clinical trials and right-to-try for patients with life-threatening conditions. Instead of preventing access to possible cures, the state government should support patients with access to potentially life-saving experimental treatments that could benefit not only those patients but future patients as well. Such a bill would certainly attract medical researchers to New Hampshire if the state's policies are favorable for clinical trials.

I worked for two decades in medical research. This early access to treatments will not always lead to cures, and it will always lead to hope, and a better understanding of how to treat diseases.

Please support this bill.

I support this Bill as long as every patient is making informed consent to the treatment and no coercion is made to "sell" an experimental , or off-label, treatment to a patient.

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Please SUPPORT HB 701 and provide freedom for patients fighting for their lives to try possible cures. Thank you!

When a sick patient is not responding well to standard treatments, they should have "the right to try" new treatments that have not yet been studied for the standard, recommended years required by federal rules. At the least, trying new treatments adds to the body of knowledge of medicine. At best, new and effective treatments are demonstrated. When anyone is facing death, they definitely should have the right to try different treatments. I thought President Trump's executive order to allow "right to try" would have been put into federal law, but apparently it is still waiting to become law. So let's make it law in NH.

Position recorded without written comment.