Number of Participants: 30
According to the previously framed guidelines, obtained from the discussions held in the first Haemophilia Self- Help group (H-SHG) on 11th September 2013, a second H-SHG meeting was conducted under the preview of Dr. Naresh Gupta, Director Professor and Head, HDCC, Dept. Of Medicine, MAMC & LN Hospital, New Delhi on 10th December 2013, so as to create public awareness and an initiative to unite the haemophilic patients registered at the centre. The primary purpose was to identify a group of haemophilic community and active office bearers who could take up issues as per the objectives proposed under H-SHG, and would represent their problems at a large to the centre.
Welcome and registration: All invitees were escorted to the seminar room at LN Hospital followed by a registration process. Patient and relatives were welcomed by Dr. Naresh Gupta and Dr. Sunita Aggarwal, Associate Professor, Dept. Of Medicine, MAMC & LN Hospital, New Delhi at the seminar auditorium by a warm speech explaining the objectives of H-SHG. The awareness programme conducted on this occasion was more people and patient oriented rather than an explanatory one, and while inviting the participants, a prior screening of the patient registry based on literacy status, availability to the centre, socio economic status, magnitude of community influence and most importantly to the ability to promotes the objectives of SHG, was performed to make sure that the impact was influential in uniting and describing the goals of SHG. The number of participants was kept to a minimum so as to include only competent patients who would actively follow the defined objectives as well as understand the necessary problems of other haemophilic patients and communicate them to the centre, thereby helping the needy and poor.
A pre-assessment test was taken by Dr. Sartaj Ali, Medical Officer, Lok Nayak Hospital, New Delhi to assess the subjective knowledge of the participants.
Establishing new haemophilia centres across the state or nation is not a feasible option, since many patients are still not aware of the clinical facilities where the treatment of haemophilia is presently available amongst which HDCC is one. In our second H-SHG meet, most of the participants visited the HATS programme for the first time. Therefore it is only knowledge and word of mouth that everyday more and more people come to know about the centre and thereby in the course a bigger number of people are served in the society.
To start with the lecture session a short clinical introductory note was delivered by Dr. Ali, to educate the audience on key topics related Haemophilia and associated topics such as severity, factor replacement therapy, arthropathy and prenatal diagnosis, vaccinations for Hepatitis, FFP were synonymous with the audience. Dr. Ali later spoke on the most commonly faced medical issues in haemophilia, that often pose treatment limitations indirectly on a national level. The problems consist of insufficient disease knowledge amongst the patients and society, lack of facilities including anti-Haemophilic factor (AHF) availability and improper diagnosis. Presently most of the well-developed hospital facilities do not conduct factor assay tests on a regular basis which makes it difficult to diagnose an unknown case of bleeding disorder only by observation. In course of untreated condition could lead to clinical complications such as reduction of motion in the affected joint, hematoma, arthropathy or pseudo-tumor. Patients with haemophilia (PWH) are also prone to various blood-borne infections, as to which Hepatitis A & B vaccinations can be helpful. However, in few patients it has been observed that in spite of appropriate factor infusion and treatment the AHF fails to achieve hemostasis. Such instances can be indicative of inhibitor development, caused as a result of repeated dosing, development of antibodies against the extraneous protein, prolonged treatment or inappropriate AHF infusion. Information on carrier-ship was also discussed with the participants so to broaden the genetic etiology about the disease. If predicted or confirmed carriers are in the family then prenatal diagnosis can be undertaken to test and minimize the chances of off-springs born with this disorder in future generations.
In the second half of the programme Dr. N. Gupta, spoke about the present barriers and challenges in the availability and accessibility of haemophilia care in India. The key topics under the challenges faced in India were inadequate patient knowledge, infrastructural facilities and Governmental support. Dr. Gupta through his speech laid stress upon patient education making in mandatory, as knowledge about the subject is the only thing that can lead us ahead in that particular area, similarly is the case with Haemophilia. He further spoke that at first when the centre was first inaugurated in 2008, the management had to face a plethora of troubles and the patient number was so insignificant that even the government did not pay much interest to subsidize any health benefit scheme for Haemophilia patients. such case. The diagnosis for haemophilia through factor test assays cost unusually high as compared to other tests plus also being a very sensitive test includes complications and handling accuracy. Treatment is state specific and provided by the government of each state. However, patients from any region of the country visiting our HDCC or emergency facility are always availed with AHF’s.
Summing up the event, Dr. Gupta announced that in the future meetings a group of consisting of the working group members will be soon finalized for taking forward the objectives of the H-SHG and will also help to convey the patients problems at large to the Centre and act accordingly.
List of few questions asked during the open hour.
- Is there any reimbursement programme for employees?
Re: Yes, if the employee has ESI Health benefit scheme, treatment can be availed under that scheme.
- Often PWH face occupational problems at the work site. How to tackle this?
Re: It depends upon the severity of the condition and also upon the understanding of the employing organization. But in all cases pre-caution and immediate treatment is advised.
- Due to absenteeism, children are often barred to take examinations. How can the centre help in this matter?
Re: The centre issue certificates for those children who are suffering from haemophilia to help their absenteeism and advise the teachers to cooperate and follow up for missed classes for these students.
- How can we know that which are safer drugs for haemophiliacs?
Re: A list of contra-indicated drugs for the particular disease will be availed to you.
- The Centre is very far from our place. Can’t any arrangement be made to deliver the AHF at our places?
Re: On an individual basis is it not at all possible. With such a huge number of patient pool it will be a bias and irrational decision.