My benlysta dream

by Laguna Lupie

An incurable autoimmune disease like lupus is always accompanied by feelings of despair and hopelessness.  It doesn’t help that research and a cure seem to be a far off dream, this being a not too well known disease, especially here in the Philippines.  But sometimes, a new discovery, a new drug will spark that sense of hope for the incurable, and you feel an electrifying sense of the possible.  I had a similar moment a few months ago when I was told there is a new revolutionary drug for lupus called benlysta, the first US FDA approved drug for lupus in fifty years, and that it’s finally available here in the Philippines.  Imagine,  the first lupus drug in FIFTY YEARS! Such news kind of makes you giddy if you’re newly diagnosed with this incurable disease. A couple of days after my rheumatologist discussed benlysta with me,  a medical representative from the drug manufacturer calls me up and told me I’m qualified to take the drug and I was so happy about this news, I was practically jumping while we were talking on the phone, I thought to myself perhaps things will be okay for me and this disease.

 And then… and then she drops the bomb on me — it’ll cost me Php150,000 for the first infusion and then it’ll cost me Php60,000 monthly for the rest of my life.  Sigh.

So I was probably too naïve.  To actually believe that things would be that easy – be diagnosed with incurable disease and then– tada!– A revolutionary new drug for said disease available to you.  It was too much to hope for and life just doesn’t work that way.

To illustrate how absurd these prices are for those not from the Philippines, an average Filipino white collar employee may earn from Php8,000 to Php15,000 per month.  If you’re in a managerial position, you may have a monthly salary in the Php20,000-30,000 range  and higher (up to Php100,000 per month in some industries).  But this is being optimistic about salaries in our country, many, if not a majority earn much less.  With these figures, it is obvious the Php60,000.00 monthly cost of benlysta becomes an absurd eye-popping amount for medications.  The government health insurance, Philhealth, does not cover for medications such as benlysta and even employees with private health insurance from their companies would most likely not get approval for benlysta infusions since the average YEARLY medical coverage for an employee provided by corporations is around P100,000.00 Why would they approve medication that costs more than half of the annual coverage to be taken on a monthly basis?  So unless you are a member of the top 50 richest families in the Philippines, benlysta will remain a dream for you.   

I was so frustrated by this discovery that I told the med rep, why’d you invent this drug when clearly the majority of lupus sufferers here cannot afford the sixty thousand per month price tag?  Then they told me I probably can’t even try to get infusions with the help of charity institutions like the Philippine Charity Sweepstakes Office (PCSO) because the drug is so new it doesn’t have government approval for charity cases and it’s not even sold in drugstores or hospitals.

That’s how it is here, either you’re super rich to get treatment or nothing and just pray your disease takes longer to kill you and hope to god you last a few years longer than expected. As it is, aside from my plaquenil, I am now into alternative methods of therapy like accupuncture, traditional chinese medicine and herbal treatments like the guyabano (soursop) leaves that’s all the rage here nowadays. Beats doing nothing and crying over medicines I can’t afford but really, deep down, I just wish we lived in a country that has a better health care system that does not discriminate against the majority who are middle class and poor.  I just wish Filipinos don’t have to spend the rest of their lives feeling helpless and raging over the sorry state of government. 

I haven’t given up though.  I have two kids and giving up and feeling sorry for one’s self is not an option.  I am still in the middle of finding ways and means (and connections) that will let me get help as a charity case (thru the PCSO and similar institutions) for possible benlysta infusions.  Fingers crossed I hope I find a way. 

Also I’m hoping I can connect with other lupus patients so as to not feel so alone about all this.  The only issue is existing support groups I have found online are all Manila or city based, I am from the province of Laguna and I don’t know where to start but that is on my top list of TO Dos – find and join a local support group for lupus patients and if I can’t find one nearby, then find a way to start a group.  I have always believed that there is strength in numbers and one of the reasons I started this blog is because I wanted to NOT feel so alone about this disease.  But the blog is not enough.  Every day I realize I need to do more.