FDA notified healthcare professionals and patients that Lamictal (lamotrigine), a medication commonly used for seizures in children two years and older, and bipolar disorder in adults, can cause aseptic meningitis. Read more
Health care for patients with neurological diseases in the United States occurs across multiple levels, ranging from primary to tertiary care and, less commonly, quaternary care.
The World Health Organization has defined primary care as the point where first medical contact occurs, and where coordination and continuity of medical services is managed. Primary care focuses on a broad range of services, rather than the diagnosis and treatment of diseases of a specific organ system, and thus primary-care providers (PCPs) have varying levels of comfort in the treatment of neurological disorders.
Secondary care is provided by specialists, such as general neurologists, who focus on diseases affecting a specific organ system, usually upon referral by a PCP. Both primary care and secondary care are provided in an outpatient setting or a general hospital setting.
Tertiary neurological care is provided by subspecialists who treat a subset of conditions that affect the nervous system. Examples include:
The study of acetazolamide for idiopathic intracranial hypertension described on page 9 of the Spring issue of BrainWaves raises an important question about a neglected aspect of clinical trials: How do investigators obtain funding to study the efficacy of a drug that has no commercial potential?
Only 300 of the approximately 7,000 known human diseases are of interest to the biopharmaceutical industry from the standpoint of prevalence or commercial potential, according to the Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH). The Orphan Drug Act of 1983 sought to use patent protection and tax incentives to promote development of drugs for diseases with a small market. In this context, the word “orphan” refers to a condition or drug that has not been “adopted” by the pharmaceutical industry because of limited commercial potential and a rare disease is one that affects 200,000 or fewer Americans. In the twenty years following enactment of the ODA, 249 orphan drugs received marketing authoriza¬tion, compared to 10 in the preceding decade, with the most notable being Amgen’s erythropoietin.
Commercial potential alone does not determine value
Low prevalence does not equate to limited commercial potential, of course, because pricing must also be considered.
Over 2,000 people arrived at the Seattle Center’s Mural Amphitheatre on Saturday, June 26th to show their support in raising awareness and finding a cure for brain cancer. There has been over $426,000 raised and the numbers continue to climb.
The walk was hosted by Accelerate Brain Cancer Cure and proceeds from the Seattle Brain Cancer Walk will benefit organizations focusing on brain cancer research and patient care in the Pacific Northwest, including the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment at the Swedish Neuroscience Institute.
These organizations are now working together using groundbreaking research and integrative patient care, to find a cure. This progress brings hope to families, friends, and the 22,000 Americans - 1,200 in the Pacific Northwest - who are diagnosed with a malignant tumor each year. If you would like more information on how to donate, please contact Davida Pennington at 206-320-3629.