Feds Appropriate $10M to Lupus Foundation for Research
The Lupus Foundation of America estimates that at least five million people worldwide suffer from any type of lupus. One and a half million of these patients are American women who are at childbearing age, and almost all experience fatigue, pain, cognitive and physical issues, hair loss, and several other symptoms that affect every facet of their lives. Those who experience complications may suffer from cardiovascular disease, stroke, and disfiguring rashes. For some, there may be no physical symptoms at all, but the suffering is real.
Other than the chronic pain that most patients experience, the expensive treatment puts them into more misery. A study published in Arthritis and Rheumatology reports a total annual cost of $20,000 per patient on account of healthcare and lost productivity. Patients concur that it costs them more than the actual healthcare cost because of not being able to work full-time due to its complications. One-third of the patients are temporarily disabled while a quarter already receives disability payments.
The data implies a need for government and non-government sponsorships that would help in both healthcare provisions and extensive research to finally put an end to lupus. The disease brings with it a huge financial impact, but more than anything, it is the quality of life that’s mainly lost. Supporting research programs would definitely help bring this back.
Defense appropriations bill for lupus research program
Among the most active lupus research organizations around the world is the Lupus Foundation of America. The foundation works with a network of lupus activists who dedicate themselves to fighting the debilitating condition.
Earlier in 2017, the foundation has led an effort to establish a research program specifically targeting the Department of Defense (DoD). The foundation has been finding new sources of funding for the military heroes who are suffering from or are prone to lupus. For more than a decade, it has tirelessly led various initiatives all for the purpose of building support for this specific research program at the DoD.
According to studies, 15 percent of the active-duty female force, 29 percent of reserves, and 16 percent of the National Guard are suffering or at risk with lupus. While this is an observable fact, the female force is racially diverse: 31 percent black (including black Hispanics) and 12 percent Hispanic (black or white).
After having clearly established the connection between lupus and the military service, the US House of Representatives has finally submitted an Appropriations Bill that allows a $5 million of support for this lupus-specific research in March 2017.
In June 2017, another bit of good news came for lupus activists. The US House of Representatives Appropriations Committee has submitted a second Appropriations Bill that adds in another $5 million monetary support for the lupus research program at DoD. This gives the foundation a total of $10 million funding to aid in researching the cause of lupus and in the development of new treatments for the military men.
Sandra C. Raymond, CEO and President of the Lupus Foundation of America, thanks all lupus activists who participated in the Foundation’s Virtual Advocacy Day wherein they sent more than 5,500 emails to US representatives and senators. According to Raymond, this effort has played a huge role in ensuring government subsidy for the lupus research.
The bill is currently at the Senate chambers for consideration so that it can finally be enacted as a law. The lupus activists are certain of the importance and urgency of the research program. Though targeted at the DoD, whatever benefits are reaped will help all other patients with lupus around the world. The foundation will continue to update the public of any information as they come.
Results of lupus research so far
There have already been numerous remarkable discoveries in the history of lupus research over the years. All these have contributed to a better understanding of the condition. Before any major discoveries were made, lupus only had a below the radar clinical description. People knew it exists, but medical professionals didn’t pay so much attention to it.
Lupus Erythematosus (LE) was first discovered in the mid-20th century when the early immune workings of the disease were observed in some patients. A few years later, physicians started using anti-inflammatory steroids to improve their condition. This was before the many side-effects of steroids were found by scientists and clinicians.
Sometime in the 1960s, the concept of autoimmunity was finally understood by the medical community. Later on, lupus was classified as an autoimmune disorder. It is also the same time that experts looked into the possible connection between lupus and genes.
By 1980, several drugs were issued to patients especially to the pregnant women with lupus recognizing the sensitivity of the condition. Aspirin and anticoagulants were some of the lupus treatments that changed the course of medication.
From 1990 to the present time, the focus has been on medications and treatments. Patients have been given medications, and their conditions are monitored accordingly to hopefully find a cure for the disease.
Experts are certain that the cure for lupus is at hand. Just as other diseases were found to be caused by viruses, bacteria, and other organisms, the culprit for lupus will soon be revealed. Now, it is just a matter of conducting research to find the reasons as to why the autoimmune disease occurs.
Spreading awareness
Although lupus is among the most widespread diseases, public awareness isn’t yet fully established. In fact, 73 percent of Americans between the ages 18-34 either know little or nothing about lupus, which is the age bracket that lupus is most commonly seen in. Needless to say, without proper orientation of the disease, there will be a slow development in disease prevention and in finding a cure.
It is necessary to stress that lupus is a debilitating condition that without diagnosis and disease management can get worse and can even result in fatalities. It has been known that 10-15 percent of patients prematurely die due to the complications of the disease. The number increases over the years and is expected to rise despite having identified treatments. Experts posit that this is due to the lack of awareness among patients and those around them.
Lupus is a personal disease and symptoms vary from person to person. A patient, thus, has to be ready both physically and psychologically. Multidisciplinary care is more important than ever. While experts are doing their best at finding a cure for lupus, patients need to help themselves cope with the situation. One way of doing this is by joining lupus communities not only to build a connection but to also be informed of any development on the way.
In conjunction with the development of awareness, there should be an effort from everyone to support research programs, monetarily or not. It is only by reaching out that support for funding and other aspects can be accomplished. No matter your situation, find ways to help yourself and others who are in the same boat as you.
Final thoughts
Both government and non-government organization are working hand in hand to find the best treatment and the cure for the life-changing lupus disease. Currently, there is no cure for it, but help is already available wherever you are situated. Do not let your productivity just be affected by the condition. Reach out, be treated, and extend help by spreading awareness about lupus. Remember that help is not on the way, it is already around.
