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Patients with rare diseases may have limited options

For Oklahoma patients who suffer from a rare disease, finding appropriate treatment options that can alleviate their symptoms or pain can be very difficult. There are over 6,000 different rare diseases that each have their own symptoms that may vary from person to person. In total, it is estimated that approximately 25 to 30 million Americans are suffering from a rare disease.

In order for a disease to be classified as rare in the U.S., it must affect less than 200,000 people.Those who suffer from rare diseases are at risk for being misdiagnosed due to the fact that their doctor may not be familiar with the disease or may not know how to treat it. In some cases, it can potentially take years to properly diagnose a disease. Once it is diagnosed, there may not be a cure or any available treatment options.

Part of the reason treatment for some rare diseases may be limited is due to the fact that the drugs are undeveloped. These drugs, known as “orphan drugs,” often do not become commercially available because they have a potentially low profitability. Many advocacy groups for different rare diseases have worked to pass legislation that helps provide funding for researchers and scientists to find appropriate treatments.

Not every failure to diagnose constitutes medical malpractice, even if the patient’s condition continues to worsen. It must be demonstrated that the health care practitioner or facility failed to exhibit the requisite standard of care. In the case of an extremely rare disease, this could be difficult, but a patient’s attorney could endeavor to do so through consultations with medical experts.