03 Oct Survey Finds Autoimmune Diseases Are Misunderstood, Common and Underfunded
MedicalResearch.com Interview with:
Virginia Ladd, CEO
Virginia Ladd, CEO
American Autoimmune Related Disease Association (AARDA)
MedicalResearch.com: Would you briefly explain what is meant by autoimmune disorders?
Response: Autoimmune disease is a broad category of related diseases which share both genetic and mechanistic properties. They occur when the person’s immune system attacks the body’s own cell, and tissue. The immune system goes awry and mistakenly attacks the tissues and organs it was designed to protect. Normally the immune system protects the It does this by body by responding to invading microorganisms, such as bacteria, and viruses. Producing antibodies which are special proteins that recognize and destroy the invaders. Autoimmune diseases occur when autoantibodies attack the body’s own cells, tissue and organs.
MedicalResearch.com: What is your connection to the work you do at AARDA? Is it personal?
Response: I have lupus and have several members of my family. That is why I founded the organization to have autoimmune diseases recognized as a disease category, to increase basic autoimmune research and improve the lives of patients by shortening the time to diagnosis and bringing about a coordinated treatment center to better serve the needs of patients.
MedicalResearch.com: In the nearly 3 decades you’ve worked in this space, what changes, advancements, setbacks have been most profound to you?
Response: In 1991, when AARDA was founded, autoimmune diseases were not even thought of as a distinct disease category. Today the words “autoimmune disease” are part of everyday language. Research funding by NIH for all autoimmune disease was $300 million, and the majority of that funding was going to one autoimmune disease. The NIH budget for autoimmune disease is now just over $ one billion. Ninety-three percent of Americans, when asked to name an autoimmune disease, answered “AIDs.” The treatment for most of the autoimmune diseases was cortical steroids which, although lifesaving, had profound side effects. In the past decade, the new biologics have come on board as treatments for many autoimmune diseases. They have had a significant impact and are even lifesaving in many autoimmune diseases as these treatments can stop progression of disease and damage to major organs. The length of time to get a diagnosis has gone an average of seven years to three years and the number of doctors a patient sees before being diagnosed has decreased from 7 to 4. At the time of our founding and up until this year there was no center of excellence for the treatment of all autoimmune diseases, such as been the case for cancer and heart disease. The Autoimmunity Institute is the first such center in the United States.
MedicalResearch.com: What is the background for this survey?
Response: This survey was conducted online in September 2018 within the U.S by Toluna Quicksurveys using weighting factors, this data represents 584 respondents. A mix of men and women between the ages of 18-65 were polled on behalf of American Autoimmune Related Diseases Association (AARDA).To learn more, please visit: https://www.aarda.org/misconceptions-autoimmune-diseases-still-exist/
MedicalResearch.com: What are the main findings?
Response: Essentially, the results show a lack of awareness in general knowledge, impact, and cause of autoimmune diseases. Some of the standout findings include:
- 41% of respondents do not understand the term “autoimmune disease.”
- 40% of respondents believe autoimmune diseases are fatal as opposed to chronic.
- 55% of respondents were not aware that 75% of autoimmune sufferers are women.
- 80% of respondents were not aware that there are over 100 types of autoimmune diseases that exist.
- 28% – or more than a quarter – of respondents either suffer from or have a family member with an autoimmune disease.
MedicalResearch.com: Are there different types of autoimmune diseases – how many?
Response: There are over 100 autoimmune diseases, and more diseases are being found to be autoimmune or have an autoimmune component. Who is primarily affected? Young women are the primary targets for developing an autoimmune disease although children and men also can get autoimmune diseases. Are autoimmune diseases always fatal? No, most autoimmune diseases are chronic, lifetime illnesses. However, they are one of the top ten causes of death in women and children under the age of 65.
MedicalResearch.com: What should readers take away from your report?
Response: Autoimmune diseases are much more common than previously thought. These diseases run in families but not necessarily as the same condition. These diseases are underfunded considering the cost to society.
MedicalResearch.com: What recommendations do you have for future research because of this study?
Response: I recommend Increased funding for autoimmune research, a study on the cost of autoimmune diseases, major medical centers opening autoimmune diseases treatment, and research centers of excellence.
MedicalResearch.com: What does the new Autoimmunity Institute signify for those living with autoimmune diseases?
Response: The Autoimmunity Institute is a place where a patient can get a correct diagnosis and coordinated treatment. Patients who have symptoms of autoimmune diseases must see several doctors before diagnosis; and with this type of center they see various specialists at the same visit which helps in getting correct diagnosis. Once diagnosed, patients usually must see several different specialists and are left to coordinate their own care. With this type of multispecialty center, their care is coordinated. The coordinated research offers patients hope that better treatments and cures will follow. At present, most research is conducted on single autoimmune disease by different specialists. Example: MS researchers do not talk with lupus researchers. In cancer researchers communicate and exchange information regarding all cancer.
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Last Updated on October 3, 2018 by Marie Benz MD FAAD