Brian Wallach | |
|---|---|
 Brian Wallach in 2024 | |
| Alma mater | Yale |
| Organization(s) | I AM ALS, Synapticure |
| Spouse | Sandra Abrevaya (m. 2013) |
| Children | 2 |
| Website | https://iamals.org/ |
Brian Wallach is an American businessman, lawyer, and amyotrophic lateral sclerosis (ALS) research and patient advocate. He became known for his activism after being diagnosed with ALS in 2017. [1] Since then, Wallach has founded a nonprofit, I AM ALS, and a telemedicine company, Synapticure.
Wallach grew up in Washington, D.C., and attended Saint Albans School. He graduated from Yale University, where he participated in track and field. [2] Wallach later received his J.D. from Georgetown University Law Center. [3]
After law school, Wallach worked on the first presidential campaign for Barack Obama, where he met his wife, Sandra Abrevaya. He joined the presidential campaign in 2007 as its deputy political director for the New Hampshire primary. [3] After the campaign, he worked at a law firm before joining the White House counsel's office in 2011. [2] From there, Wallach became a federal criminal prosecutor in the U.S. Attorney's Office in Chicago. [4]
Wallach and his wife, Sandra Abrevaya, have co-founded two organizations focused on ALS. [5] In 2019, they launched I AM ALS, a non-profit seeking to find a cure for ALS through funding and expanding access to research. [2] In 2022 they founded Synapticure, a telemedicine company that provides care to those living with ALS, PLS, and Parkinson's. [4]
Wallach was diagnosed with ALS in 2017 at the age of 36 on the same day he and his wife brought home their second daughter from the hospital. [3] Originally visiting the doctor for a persistent cough, Wallach had also mentioned experiencing muscle tremors and weakness in his left hand and was told he probably had a progressive neurodegenerative disease. [2] After his diagnosis, Wallach was given six months to live. [6]
In January 2019, Wallach and Abrevaya launched I AM ALS. [7] In April of the same year, Wallach testified before Congress, advocating for ALS patients and research funding while sharing "what it's like to live with a fatal diagnosis." [8] Wallach argued that Congressional committees rarely heard from people diagnosed with ALS "because ALS is a relentless churn. We diagnose. We die, quickly. We don't have time to advocate." [3]
Wallach's testimony spurred a legislative process that eventually led to President Joe Biden's December 2021 signing into law of the Accelerating Access to Critical Therapies for ALS Act, while acknowledging the contribution, and detailing the story, of Wallach and Abrevaya. [9] This bill, which Wallach co-authored with others, provides expanded access to medications being studied in clinical trials to those who have been previously unable to participate. Also, this bill authorizes $100 million a year for five years to increase ALS research. [10]
The ALS Disability Insurance Access Act was initially introduced in 2017 to shorten the five-month wait time for ALS patients to access disability benefits. [11] A network of non-profits, including I AM ALS, advocated to move the bill forward, which the United States Senate passed in December 2020. [12]
In June 2022, Wallach threw out the first pitch before a Chicago Cubs game at Wrigley Field as part of Lou Gehrig Day to raise awareness for ALS. [13]
Wallach and Abrevaya were amongst those who testified at Congressional hearings advocating to have the Food and Drug Administration (FDA) approve the ALS drug sodium phenylbutyrate/ursodoxicoltaurine. [14] A network of non-profits, including I AM ALS, submitted more than 50,000 signatures to the FDA calling for approval of the drug. [14] In September 2022, the FDA approved it, making it the first new ALS drug in five years. [15]
In December 2022, Dan Tate, an I AM ALS Board Member, delivered an I AM ALS petition calling for the FDA to hold an Advisory Committee meeting on the drug NurOwn. [16]
A July 2023 story by NPR described the work of Wallach and Abrevaya as having "changed the face of medical advocacy." [17]
In 2019, Wallach and Abrevaya started working with filmmaker Chris Burke, Wallach's friend from Yale to create the documentary, No Ordinary Campaign. [18] The film follows Wallach and Abrevaya as they travel across the US gathering information on the healthcare system's handling of rare and fatal diseases, and their work that led to increased federal funding, expanded access to therapies, and increased awareness of neurodegenerative diseases.
The documentary premiered in October 2022, at the Chicago International Film Festival, which featured a panel discussion with the film's executive producer, Katie Couric. [19] The film received the festival's Audience Choice Award: Best Documentary. [20]
Muscular dystrophies (MD) are a genetically and clinically heterogeneous group of rare neuromuscular diseases that cause progressive weakness and breakdown of skeletal muscles over time. The disorders differ as to which muscles are primarily affected, the degree of weakness, how fast they worsen, and when symptoms begin. Some types are also associated with problems in other organs.
Multiple myeloma (MM), also known as plasma cell myeloma and simply myeloma, is a cancer of plasma cells, a type of white blood cell that normally produces antibodies. Often, no symptoms are noticed initially. As it progresses, bone pain, anemia, kidney dysfunction, and infections may occur. Complications may include hypercalcemia and amyloidosis.
A prescription drug is a pharmaceutical drug that is permitted to be dispensed only to those with a medical prescription. In contrast, over-the-counter drugs can be obtained without a prescription. The reason for this difference in substance control is the potential scope of misuse, from drug abuse to practicing medicine without a license and without sufficient education. Different jurisdictions have different definitions of what constitutes a prescription drug.
An orphan drug is a pharmaceutical agent that is developed to treat certain rare medical conditions. An orphan drug would not be profitable to produce without government assistance, due to the small population of patients affected by the conditions. The conditions that orphan drugs are used to treat are referred to as orphan diseases. The assignment of orphan status to a disease and to drugs developed to treat it is a matter of public policy that depends on the legislation of the country.
Chronic myelogenous leukemia (CML), also known as chronic myeloid leukemia, is a cancer of the white blood cells. It is a form of leukemia characterized by the increased and unregulated growth of myeloid cells in the bone marrow and the accumulation of these cells in the blood. CML is a clonal bone marrow stem cell disorder in which a proliferation of mature granulocytes and their precursors is found; characteristic increase in basophils is clinically relevant. It is a type of myeloproliferative neoplasm associated with a characteristic chromosomal translocation called the Philadelphia chromosome.
Muscular Dystrophy Association (MDA) is an American nonprofit organization dedicated to supporting people living with muscular dystrophy, ALS, and related neuromuscular diseases. Founded in 1950 by Paul Cohen, who lived with muscular dystrophy, MDA accelerates research, advances care, and works to empower families to live longer and more independent lives. Renowned for The MDA Labor Day Telethon, the annual telecast aired live from 1966 to 2010 and was hosted by Jerry Lewis, who also served as MDA's national chairman.
Hereditary angioedema (HAE) is a disorder that results in recurrent attacks of severe swelling. The swelling most commonly affects the arms, legs, face, intestinal tract, and airway. If the intestinal tract is affected, abdominal pain and vomiting may occur. Swelling of the airway can result in its obstruction and trouble breathing. Without preventive treatment, attacks typically occur every two weeks and last for a few days.
Moffitt Cancer Center & Research Institute is a nonprofit cancer treatment and research center located in Tampa, Florida. Established in 1981 by the Florida Legislature, the hospital opened in October 1986 on the University of South Florida's campus. Moffitt is one of two National Cancer Institute-designated Comprehensive Cancer Centers based in Florida. In 2021, U.S. News & World Report ranked Moffitt Cancer Center as a top 30 cancer hospital in the United States.
Despite the scientifically well-established nature of attention deficit hyperactivity disorder (ADHD), its diagnosis, and its treatment, each of these has been controversial since the 1970s. The controversies involve clinicians, teachers, policymakers, parents, and the media. Positions range from the view that ADHD is within the normal range of behavior to the hypothesis that ADHD is a genetic condition. Other areas of controversy include the use of stimulant medications in children, the method of diagnosis, and the possibility of overdiagnosis. In 2009, the National Institute for Health and Care Excellence, while acknowledging the controversy, stated that the current treatments and methods of diagnosis are based on the dominant view of the academic literature.
Self-diagnosis is the process of diagnosing, or identifying, medical conditions in oneself. It may be assisted by medical dictionaries, books, resources on the Internet, past personal experiences, or recognizing symptoms or medical signs of a condition that a family member previously had or currently has.
In medicine, an indication is a valid reason to use a certain test, medication, procedure, or surgery. There can be multiple indications to use a procedure or medication. An indication can commonly be confused with the term diagnosis. A diagnosis is the assessment that a particular medical condition is present while an indication is a reason for use. The opposite of an indication is a contraindication, a reason to withhold a certain medical treatment because the risks of treatment clearly outweigh the benefits.
Expanded access or compassionate use is the use of an unapproved drug or medical device under special forms of investigational new drug applications (IND) or IDE application for devices, outside of a clinical trial, by people with serious or life-threatening conditions who do not meet the enrollment criteria for the clinical trial in progress.
Fast track is a designation by the United States Food and Drug Administration (FDA) of an investigational drug for expedited review to facilitate development of drugs that treat a serious or life-threatening condition and fill an unmet medical need. Fast track designation must be requested by the drug company. The request can be initiated at any time during the drug development process. FDA will review the request and attempt to make a decision within sixty days.
The "war on cancer" is the effort to find a cure for cancer by increased research to improve the understanding of cancer biology and the development of more effective cancer treatments, such as targeted drug therapies. The aim of such efforts is to eradicate cancer as a major cause of death. The signing of the National Cancer Act of 1971 by United States president Richard Nixon is generally viewed as the beginning of this effort, though it was not described as a "war" in the legislation itself.
Carfilzomib, sold under the brand name Kyprolis, is an anti-cancer medication acting as a selective proteasome inhibitor. Chemically, it is a tetrapeptide epoxyketone and an analog of epoxomicin. It was developed by Onyx Pharmaceuticals.
Chronic Lyme disease (CLD) is the name used by some people with non-specific symptoms, such as fatigue, muscle pain, and cognitive dysfunction to refer to their condition, even if there is no evidence that they had Lyme disease. Both the label and the belief that these people's symptoms are caused by this particular infection are generally rejected by medical professionals. Chronic Lyme disease is distinct from post-treatment Lyme disease syndrome, a set of lingering symptoms which may persist after successful antibiotic treatment of infection with Lyme-causing Borrelia bacteria, and which may have similar symptoms to those associated with CLD.
Right-to-try laws are United States state laws and a federal law that were created with the intent of allowing terminally ill patients access to experimental therapies that have completed Phase I testing but have not been approved by the Food and Drug Administration (FDA). Prior to the passage of right to try laws, patients needed FDA approval to use experimental drugs. As of 2018, 41 U.S. states had passed right to try laws. The framers of these laws argue that this allows for individualized treatments that are not permitted under the FDA's current regulatory scheme. The value of these laws was questioned on multiple grounds, including the fact that pharmaceutical manufacturers would have no obligation to provide the therapies being sought. A federal right to try law was passed in May 2018. Very little data is available about the number of patients who have used the right-to-try pathway, but available sources indicate that since the signing of the bill only a handful of patients have used this pathway to access experimental therapies, as most physicians and sponsors prefer the more traditional, FDA approved, Expanded Access route. According to Scott Gottlieb, who served as commissioner of the FDA under President Donald Trump, the FDA had already approved 99% of patient requests for access to experimental drugs, either immediately over the phone or within a few days, prior to the passage of right to try legislation.
AMCP is a professional organization representing the interests of pharmacists who practice in managed care settings. It publishes the Journal of Managed Care & Specialty Pharmacy.
The 21st Century Cures Act is a United States law enacted by the 114th United States Congress in December 2016 and then signed into law on December 13, 2016. It authorized $6.3 billion in funding, mostly for the National Institutes of Health. The act was supported especially by large pharmaceutical manufacturers and was opposed especially by some consumer organizations.
Barry Gingell was an American internist, nutritionist, computer scientist and AIDS activist. He served as a medical director for the Gay Men's Health Crisis and an advocate for experimental drugs during the AIDS epidemic in the 1980s.