Dr Rajesh Taneja, Senior Consultant Urology, Andrology and Robotic Surgery Indraprastha Apollo Hospitals, New Delhi
Bladder pain syndrome, widely known as Interstitial Cystitis is a disease entity, which is difficult to understand, diagnose and treat. While the patient and their immediate family members keep suffering, they are deprived of help, primarily due to lack of awareness amongst the healthcare providers. Swati Spentose Private Limited (SSPL) happen to have understood this gap in the knowledge and the deficiency in percolation of existing knowledge to physicians. SSPL have decided to bridge this gap and disseminate the knowledge amongst physicians.
This is a huge task considering the fact that millions of people across the globe are suffering from this enigmatic disease and are waiting for help. Not only have SSPL committed themselves to provide help in far reaching areas of world, they have also the research and development in the field of diagnosis and treatment of this disease, in a manner that can be labeled as ‘beyond the current horizon’. They began in early 2000 with putting up a world class manufacturing facility now approved by US FDA, to produce Pentosan Poly Sulphate (PPS, Comfora) the sheet anchor of treatment of Bladder Pain syndrome. They have set up a global scientific body of medical experts to initiate the process of standardization of current methods of diagnosis and treatment, plan research to refine the scientific approach to this disease, and invest in basic research to develop what can be termed as ‘futuristic tools for diagnosis and treatment’ of this disease. This has been aptly named as Global Interstitial Cystitis Bladder Pain Society (GIBS). I wish Mr. Vishal Jajodia , philanthropist and the force behind this movement all the very best.
Dr. Sanjay Pandey, Consultant Urology And Renal Transplantation Kokilaben Dhirubhai Ambani Hospital – Mumbai
SSPL Has played a pivotal role in shaping management and awareness of the progressive and debilitating disease -Interstitial cystitis /bladder pain syndrome that afflicts bladder mucosal lining in vast young aged population, predominantly affecting women.
SSPL is the only company in the country and besides the originator in Germany to have made the “definitive and curative” medicine for interstitial cystitis named Sodium Pentosan polysulphate (Comfora as their wonder brand). This medicine replaces and replenishes the damaged glycosaminoglycans layer of the bladder and stabilises the disease from continuous damage of the Interstitium.
SSPL has taken the huge leap in this disease by taking the science and reality of the disease to the doctors in the country and awareness drive to the society as a unique campaign to help many needy patients reach their destination of treatment.
It’s a “SAVE THE BLADDER PROJECT “that they have taken upon themselves by being the only makers of the curative drug of the disease and concerted awareness campaign for both doctors and patients.
They have now embarked on newer delivery mechanisms of the drug that will have far reaching consequences once available as direct intravesical form and liposomal form for the first time.
SSPL Have so many firsts to their credit by doing all the above and I congratulate them for being leaders in a disease with focused drive for the society that will place the campaign to highest levels.
Dr Amita Jain (Sr. Consultant – Urogynecology, Institute of Urology & Robotic Surgery Medanta – The Medicity, Gurugram, India)
GIBS is a very good initiative for giving a place to this debilitating disease “IC/BPS”. This disease is still not recognized among gynecologist as well as urologist and even general practitioners don’t even know the term. This is existence of diseases. So it’s a good initiative by doing these kinds of meetings and by making a guideline like how to diagnose this condition, how to treat this condition. We are actually not only making this disease recognizable, but we can also tell doctors that they can even treat IC patients. What is the use of diagnosing a disease if you don’t know the treatment or if the treatment is not available, hence it is very important to spread the awareness among medical fraternity! And as this is the only FDA approved treatment of this condition, so availability of this medication in India is the best thing. And that why I appreciate you people that you did this. Your company was the first which launch this molecule in India, and once we come to know that it is available than we were more sure about the treatment of these patients and I started treatment in few patients and I saw a good results so it was very good and I change my thought regarding this disease than I started taking these patients and treating these patients.
Dr Apul Goel (Professor, Department of Urology, King George Medical University, Lucknow)
I have been invited to this Forum called as Global Interstitial Cystitis and Bladder Pain Society (GIBS), and I think it’s a really great initiative. Interstitial cystitis and Bladder pain Syndrome are relatively lesser known conditions, and we as urologists are basically surgeons and we are more interested in performing surgeries, and we are less of Physicians, and many times these patients, because of our busy schedule and because these patients need time, so many times we miss these conditions and hence these patients suffer. So for me personally, if you talk about GIBS, the biggest advantage is I got sensitized again, to look for these patients and will surely be able to help them.
Dr Navita Purohit (Consultant Physiatrist -Pain Medicine & Palliative Care, Kokilaben Dhirubhai Ambani Hospital, Mumbai)
Mr. Vishal Jajodia, when I first met him, he talked to me about his vision about Swati Spentose, and the raw material which they are providing which is very important, the Pentosan Polysulfate as a drug for treating Interstitial cystitis. So, I think not only in India, but the patients in other countries, are also be benefitted. I would like to congratulate the team of GIBS for the initiative they have taken, for Nobel work they are doing through. Thank you to Mr. Jajodia for bringing all of us together for a Universal cause, which can make a difference to the society in the coming years.
When we talk about pain, being a pain specialist, I have to treat the symptoms. And when I have to treat the symptoms, I have to treat the pathology because I don’t want the pain to recur, because the patients are going in a bad shape for years together and not diagnosed properly. So, PPS as a molecule, by the time it works it takes a long time to work, but the effect remains for long period of time. PPS is really a good molecule and we have seen great results with around 3 months of therapy because it takes some time. So, by the time it starts its action, the pain management helps. So, we are treating the pain, the symptoms as well as the pathology.
Dr. Ranjana Sharma (Senior Consultant, Obstetrics, Gynaecology, Urogynaecology, Laparoscopic and Robotic surgery, Indraprastha Apollo Hospitals, New Delhi)
I’m really thankful to Mr. Vishal and Mrs. Swati Jajodia for such a wonderful effort to bring us together all the urologists, gynecologists, and urogynecologist on the same platform to discuss a disease that we cannot actually ignore but very little is known about.
Swati Spentose has a vision, energy and the time to spend on an issue that is so relevant to the fraternity of the doctor and public and I’m sure with their positive approach & the passion they have for the molecule Pentosan, they can go to any extent to prove its worth and they are also giving us (doctor’s) the opportunity to brainstorm and discuss all the scientific facts evidence so that the patients will be benefited by this molecule which is not used so much in India because of mainly lack of awareness about the molecule.
The molecule seems to be very promising because we have seen that what is the main pathology in the disease and the cause of the pain of the patient is the lining of the bladder that gets disturbed or denuded. We need a protective layer inside the bladder to protect the rest of the bladder wall and this molecule seems to be doing exactly that, and the best thing is that it can also be given orally so it’s a very simple route to administer and we can even install it in the bladder, so it’s very good.
Dr Shivam Priyadarshi (Professor, Dept. of Urology, S.M.S.Medical College & Hospital, Jaipur)
Company Swati Spentose Pvt. Ltd. is doing a very good job because in India what is lacking in the various pharmaceutical companies is the research part. So if this company as I could gather is doing a lot of research works in this particular molecule and they have done a very commendable job so I must congratulate the company.
Of the pharmacotherapy, the only drug which is available today is Pentosan Polysuphate which this company is marketing as COMFORA. I think a sizable number of patients do respond to this drug. We are in the process of finding even newer molecules and I think this society that has taken this initiative will do a lot in the future.
Dr Suchitra Pandit (Sr. Consultant – Gynecology & Obstetrics at Kokilaben Dhirubhai Ambani Hospital)
Sometimes you really start wondering what is the pain that the patient has. Is it chronic pelvic pain? And quite often the patient would be labeled as, ‘Oh! Maybe she has got a psychological problem.’
Many a time it would happen that we would not know it earlier, but now I know there is a diagnosis, Of course it’s a diagnosis of exclusion, but at least now we have formed some kind of treatment available. In the last 1and half years we had 3 patients with chronic cystitis and they were wrongly labeled as Chronic Pelvic Pain, and then many of the times people tend to say, ‘Oh! It’s a Psychological cause’. So, though this is a diagnosis of exclusion, I’m very certain, that there are certain pointers to it, and as a Gynaecologist, we should pick it early, and then refer the patient to a urologist who is also having an interest in this particular aspect, and then there would be a treatment.
I’m glad that I have started thinking about it and I’m sure that many of my colleagues now would also start thinking, once we spread that awareness. I’m glad that this GIBS initiative has been taken because, I think that when we are thinking of women, we as gynecologist’s have tend to remove the sufferings in women, and where it is a preventable problem, yes, we do also advocate all those instructions, but where there is a painful condition and alleviate pain certainly. I think GIBS guidelines would go a long way, and will create a lot of awareness.
When I got to know that Swati Spentose were doing a lot of work and they were actually promoting this cause more than actual marketing gimmick, I was very impressed with that, because it is a ‘cause’, and you’re fighting for a cause, and then if you have a product which will take care of that pain, alleviate that pain, I think it’s a great move. And so, I would like to congratulate the owners and the visionaries of this company for having a thought of this brilliant product, it has bought so much relief. It’s easy to use, it’s easily available and it not very expensive and patients can actually afford it, and if its available and it really helps, I think it will go a long way. Sometimes the patients get only pain killers and anti-psychotics, but here it is actually helps in healing the Interstitial Cystitis, and I think it’s a very brilliant molecule.
Dr Uttam Mete (Professor, Department of Urology, PGIMER, Chandigarh)
As most of the research work is taking place in USA, I must say whatever the molecules comes out after research, the consumers are mainly Indians, because our population is really big. So indirectly we are supporting their research. So rather doing that, I think we should support our own research and let them consume our research product.
I must say Swati Spentose is the only company who are after basic research works, and not only in promoting their molecule like others companies. I don’t know how much they invest for their basic research. For any academic activities many companies does come forward to support these things, but for research I’m not aware of any other company who are selling Urological products which are coming forward. So, in that matter, I must say, Mr. Vishal is doing a great job, has a great visionary, and if at all he’s becoming very successful, he will be a Global Person, and that’s how I think it’s a very good company with a strong vision.