There is hope for lupus

Almost 10 years ago, I started the Hope for Lupus Foundation with the goal of increasing awareness about lupus – to aid in the early detection and diagnosis of the disease which, in turn, could save lives. Some people who experience symptoms such as extreme fatigue, joint pains, rashes, hair loss, mouth sores, unexplained fevers, shortness of breath and sun sensitivity may not realize that these are the symptoms of lupus. Without greater awareness, they may not seek timely medical attention or know that a rheumatologist is the specialist best equipped to diagnose and manage the condition.

This is what I experienced when I ignored the symptoms I was feeling and delayed seeing a doctor. When I finally decided to see a doctor, I consulted the wrong specialist and went through one misdiagnosis after another. Some people wait years before seeing a doctor, and by then a lot of damage has already been done to their bodies. Increasing awareness about lupus can help people recognize the symptoms of lupus and seek help early on.

Part of the Hope for Lupus Foundation’s mission is to help people with lupus who do not have the resources to get the treatment necessary to manage the disease. It is evident that there is a lack of support for indigent people with lupus and the foundation strives to fill that gap by providing assistance whenever possible. We hope to ensure that no one faces the challenges of lupus alone simply because of financial hardship.

Every year, May 10 is recognized as World Lupus Day, a regular reminder of the need to raise awareness and devote resources to battling lupus and supporting those who are afflicted with it. The World Lupus Federation (WLF) released new global survey results on public awareness, attitudes and perceptions of lupus, and the dismal numbers show the persistent invisibility of a disease that causes suffering to millions of people. The report states:

A global lack of familiarity with lupus underscores how much work remains in improving understanding of the disease. Awareness is lowest in Europe (68 percent) and Asia (64 percent)...

Even among those familiar with lupus, knowledge is limited:

• 48 percent do not know or are unsure lupus can affect any organ in the body;

• 46 percent are unaware that it can be fatal

• 41 percent don’t know or are unsure that symptoms can vary widely from person to person.

This ignorance leaves plenty of room for misconceptions to creep into the minds of people, the kinds of myths and misunderstandings that lead to ostracization and stigma in the eyes of the public. A substantial number of the respondents were uncertain about the causes of lupus, and led to a good number believing that it was contagious (it is a noncommunicable disease) and the respondents being uncomfortable with sharing food with someone who has lupus, or even hugging them.

This is why the passage of the Comprehensive Lupus Prevention Act in the Senate earlier this year is a cause for hope and celebration for those who, like me, suffer from lupus. The bill seeks to address some longstanding issues for how the problem of lupus is tackled here in the country. These issues include the dearth of national data gathering and record keeping concerning the disease, the high cost of diagnosis and early detection and the lack of a comprehensive, national approach to the care and treatment of lupus.

The bill would provide, amongst other things, that the Philippine Health Insurance Corporation would include the cost of early detection and screening programs for lupus as one of the available benefits to its members. The early detection and screening fees would be applied to, among others, testing cost, education, follow-up and readable overhead expenses (Section 8 of the bill).

An annual survey would also be conducted by the National Institutes of Health to determine the extent and total incidence and prevalence of persons with lupus in the country, which would greatly assist in the proper formulation of government response (Section 4 of the bill).

The bill would also mandate the creation of a National Program for Lupus Prevention and Treatment, a comprehensive and nationwide program on lupus prevention and treatment meant to provide mechanisms for diagnosis, education, referral services, research, advocacy and information sharing (Section 6 of the bill). Lupus impacts lives in a wide variety of ways, and a wholistic approach is necessary to properly engage with it.

Most important, perhaps, are the various concrete programs and services that would be established for lupus prevention. The bill proposes the following, to be provided by the Department of Health (Section 7 of the bill):

• orientation and counseling services for families of newly-diagnosed persons with lupus;

• establishment of national and regional referral services where the DOH shall maintain an updated list of health care institutions and practitioners concerned with the treatment of lupus;

• publish a newsletter on current developments and research on lupus, as well as other reading materials on the early detection, prevention and treatment of lupus, and best practices for the care of diagnosed persons with lupus;

• conduct of continuing education and training programs on the proper care of diagnosed persons with lupus and

• establishment of a databank and an information and monitoring system on country-specific statistics pertaining to lupus.

Of course, the bill needs to pass into law for these benefits to become reality. This is why we need to be aware that the bill exists, and that it is now in the House of Representatives. This is why it’s important to send messages to our representatives and encourage them to move swiftly for the passage of the bill. After all, if it is difficult for the public to be aware of lupus and the facts surrounding the disease, then it is also clear that without sustained effort, awareness of this important bill could also fall by the wayside.

As I regularly advice everyone, but particularly during this time of the year: if you or someone you love is suffering from lupus or is someone you believe may be suffering from lupus, you may send a message to
@HopeForLupusPH in Instagram and Facebook to ask for assistance. The Hope for Lupus Foundation provides support to people with lupus and their families.

This bill, too, represents hope for those suffering from lupus. We are grateful that it has come this far, and we hope that you will join us in urging for its passage. It could mean the difference between life and death for many.