Type of task force
2021 Annual Report
Plans to establish a legal, not-for-profit subsidiary in India.
The Challenge and background to the current scenario in India...
India is a huge country, with a population of 1,392,700,000 and ready to overtake China as the most populous country in the world by 2027. The country is a extremely diverse and democratic and consists of: 28 states; 8 union territories; 121 spoken languages and; 6 main religions practiced.
The Prevalence of PH in India...
- PH is considered a rare disease. However, current patient estimates suggest over 100,000 patients, many undiagnosed without medical care.
- The Pro-Kerala registry in 2018 published 2,003 patients - the second largest registry in the world. Data was collected from Kerala (one of the smaller states) with high levels of literacy and an excellent health infrastructure.
- At 3 centres in Mumbai, Hyderabad and Kochi there are more than 1,500 patients currently diagnosed to have PH.
- Over 200,000 babies born each year with congenital heart disease.
- We can easily assume that PH presents a huge medical problem and unmet need.
Pulmonary hypertansion in India...
- PH is neglected due to the vast discrepancy in the doctor to population ratio, currently 1:1456 (compared to the UK: 1:330).
- At present there are only 4 dedicated PH clinics in the entire country.
- Lack of awareness of the disease, sketchy referral patterns and lack of standard guidelines for evaluation management of PH, leaves the overall care provided to the patients at the individual discretion of the treating physician.
- The Pro-Kerala registry also demonstrated that only one out of two patients with PAH is receiving PH specific therapies.
- Limited available drugs.
- Patients do not have an organisation that represents them and that undertakes ‘advocacy’.
- Ready-made network of Task Force leaders with 197 members.
- Building on previously run successful activities:
- Bi-annual high altitude Leh Symposium.
- Annual PVRI conferences for 3 years in a row with at least 2 international faculty.
- 2 Paediatric PAH conferences in 2 years preceeding the COVID-19 pandemic.
- At least one PVRI conference in each region over the last 2 years with national faculty.
- ‘Living with PH’ a unique webinar for the patients, by the patients - facilitated by PVRI India Task Force and attended by 1,700 participants from all over the world. • PVRI quiz competition for postgraduates. Attended by more than 600 students from all over the country.
- Set-up an informal patient support group.
- Set-up 8 Task Forces of experts who have started work to write guidelines for managing PH in India.
- Ready-made accredited PH online diploma course, developed by PVRI UK, can be adapted for the Indian medical community.
- Huge fundraising potential due to no formal patient body.
Set-up a legal subsidiary in India of the PVRI Proposed directors of PVRI India:
Mumbai Dr Prashant Bobhate PAEDIATRIC CARDIOLOGIST
New Delhi Dr Qadar Pasha GENETICS
Hyderabad Dr Bhahavatula Kutumba Srinivasa Sastry ADULT CARDIOLOGIST
Mangalore Dr Abraham Babu CARDIAC REHAB
Mumbai Dr Sujit Rajan PULMOLOGIST
Hyderabad Dr Vishwesharan PULMOLOGIST
Shalaka Parab PATIENT WITH PH WHO IS ACTIVELY MANAGING THE CURRENT PATIENT SELF HELP GROUP, ENDORSED BY THE PHA, USA.
Professor Ghazwan Butrous FOUNDER OF PVRI UK
- Set-up a separate legal entity in India and register as a not-for-profit charity.
- Mission and vision aligned to PVRI UK.
- Activities to mirror PVRI UK fit-for-purpose for India & South East Asia region.
- Indian directors to cover the geographical area of the country.
- One patient representative on the Board of PVRI India who is aligned with PHA USA, the largest PH patient organisation in the world.
- One director from the UK: Professor Ghazwan Butrous, founder of PVRI UK.
- Separate Indian bank account.
- Annual audits in India and the UK.
- Transparent book keeping and financial audit trails using SAGE accounting software.
The legal structure...
Working with the UK India Business Council which is approved by the UK Government & Foreign Ministry UK India Business Council to provide support throughout the setting up process ensuring:
- Legal compliances.
- Registered address.
- Book keeping, accountancy and audit services.
- Setting up of bank account and monitoring all financial transactions.
- Communication with UK head office.
- Approval by UK accountants and auditors.
- Ensuring all government regulatory compliances are adhered to.
- Register for not-for-profit/charitable status ensuring tax exemption.
- Compliance of all potential fund-raising activities.
- Provide local administration and management support.
India's unique characteristics...
- No PH referral network.
- Only 4 established PH centres of excellence.
- No legal or recognised framework of PH patient bodies.
- No formal PH focused fund-raising.
- Approximate PH patient estimate over 100,000, many undiagnosed without medical care.
- Over 200,000 babies born each year with congenital heart disease.
- Very proactive India Task Force running established activities.
- Yoga in PH research study funded by The Dinosaur Trust 2021- 2023, endorsed by WHF.
- Goodwill and probono work from engaged patient body.
- Medical links to UK and USA doctors originating in India.
- Population: 1.4 billion people (compared to the USA: 330 million).
- Sophisticated economy.
- Tax incentives for companies to give to charities. Over 600,000 high net-worth individuals (earning over USD 1 million).
The proposed activities over the next 3 year's...
Increasing awareness of PH in health care practitioners
- Annual PVRI India conference with at least 2 international faculty (covering all specialities).
- At least one CME activity yearly, in all the tier one cities of the country (we have 8 tier one cities in India).
- Helping to set-up one PH centre in each of these cities.
- Masterclass for PG students to increase the awareness of the disease in the formative years.
- Creating an app which would act as a virtual bridge between the patients and doctors to help manage patients better.
- PVRI Annual World Congress on PVD to be held in India within 3 years of launch.
Increasing awareness in general public and helping PH patients
- Establishing a formal patient support group under the PVRI India umbrella to add credibility for fundraising activities. •
- PH day activities including: podcasts, FM radio activities and newspaper articles and press realeases.
- Informative website for patients presented in regional languages.
The investment required...
- Secure start-up funds from PVRI UK via a grant from the Cardiovascular Research and Medical Fund (CMREF) in the USA.
- Confirm sponsorship from Indian national pharma companies which is essential.
- Plan proactive fundraising activities via PH patient network.
- Identify high profile patrons to engage business community and provide advocacy
- Undertake a fundraising campaign from PVRI UK to attract support from its worldwide network of PH physicians.
- Initiate advocacy in collaboration with PHA USA, the larget PH patient organisation in the world.
Expanding the PVRI global mission...
- Validates PVRI’s global reach.Emphasises unmet PH need in developing world providing advocacy with WHO, NCDA, WHF, etc...
- Increases partner opportunities.
- Encourages exchange programmes.
- Provides shadowing and mentoring opportunities.
- Facilitates sponsorship of Fellowships.
Task Force Activity 2009 - 2021
To see all of the activities for this Task Force fro 2009 - 2021 pleasee see the PVRI India Task Force booklet
2020 Annual Report
This year has been a turbulent one with Covid-19 hitting the world hard. 2020 has been a memorable year, sadly for all the wrong reasons. It was the year that introduced us all to a new species of the Coronavirus which turned out to be deadly. Almost every activity of the world came to a standstill, including some aspects of scientific research. This significantly affected output for this Task Force. Firstly the two planned face to face meetings in India and Kyrgyzstan had to be cancelled. This did prompt the two organisers and PVRI to discuss the value of a coordinated approach in the future with one combined high altitude meeting from the Task Force each year henceforth.
Early this summer Max Gassmann visited the highest research facility in Switzerland, the Jungfraujoch Hut, located at an altitude of 3500m. Research planning there involved a project to keep human volunteers and animal models at that altitude for weeks to analyse the impact of high altitude on a variety of gene expressions. The Swiss high altitude research facility might be complementary to facilities in Leh (India), Puno (Peru), Lhasa (Tibet) and many other locations in the word and PVRI could coordinate joint research.
Project on gene drug development 2020 and acute exposure to altitude
Dr Qadar Pasha’s genetic study was awarded support for the next two years by The Cardiovascular Medical Research and Education Foundation, in Philadelphia, however work had been postponed due to the pandemic. His institute CSIR-IGIB which has received PVRI support decided to divert research time to the Coronavirus.
One important experiment looking at the effects of travelling from sea level to high altitude and back in a population of young volunteers was undertaken. The team of 35 youngsters, who volunteered for the drug based study where taken rapidly from sea level (Delhi) to high alititude (Leh) and back. The team were put through rigorous Coronavirus testing whilst visiting the Himalayan region and were able to achieve their desired goals without any unwarranted events. Clinical observations, Lake Louise score, chest-radiography and echo were all recorded, along with blood samples. The volunteers greatly enjoyed the visit to Leh and everyone conveyed their wish to be apart of any future research activity allowing them to re-visit.
Coronavirus effect in Ladakh, the Himalayan highland
Despite the high altitude environment of Ladakh, like most counties it could not escape the grasp of the Coronavirus. Reports from other similar highland regions of South America had suggested that the native people are resistant to Covid-19. Minimal travel, and maximum precautions coupled with sanitisation will prevent the spread of infection and these are more likely causes for that highland region. The virus appears to be resistant to any extreme environment and all our observations suggest that the clinical effects of Covid 19 are the same at high altitude as sea level.
Research activities in this period
Naturally every academician come researcher focused their attention on to the Coronavirus, stalling ongoing research, with everyone actively sharing their own knowledge on the virus whether or not their expertise was in the microbiology and virology field. Official websites including the WHO have done a commendable job sharing information and protecting lives. Even PVRIs own Task Force leader Dr Qadar Pasha devoted three months of his time assembling knowledge on the Coronavirus, and subsequently producing a couple of manuscripts, one of which was published.
This year, a visit was made to Leh in February and the venue and programme was finalised for the 6th International Leh Symposium, alas it had to be postponed. The next date will be in August or September 2021 and hopefully the venue will be the Mahabodhi Global Family Resort in the serene surrounding of the model village Saboo Dho, near Leh, where they organised their scientific expedition.
Two reviews from us in 2020:
Sex-derived attributes to SARS-CoV-2 fatality in co-morbid patients.
Neha Chanana, Tsering Palmo, Kavita Sharma†, Rahul Kumar, Brian Graham, Qadar Pasha. AM J Physiol Endo&Met 2020
Vascular homoeostasis at high altitude: role of genetic variants and transcription factors.
Neha Chanana, Tsering Palmo, John H Newman and M.A Qadar Pasha. Pul Circa 2020
2019 Annual Report
This year we had two successful meetings to raise awareness about pulmonary hypertension:
12-13 April 2019 - Paediatric Pulmonary Arterial Hypertension Symposium, Mumbai
This one-and-a-half-day symposium, co-sponsored by the PVRI and pharma, was held at Kokilaben Dhirubhai Ambani Hospital & Research Institute, Mumbai.
Invited speakers sponsored by the PVRI were Professor Sheila Glennis Haworth CBE and Professor Shahin Moledina, together with a host of Indian faculty. The symposium was attended by 87 delegates and was covered by nationwide live telecast, viewed by 103 delegated on day 1 and 110 delegates on day 2.
The event provided a broad insight into the diagnosis and management of paediatric pulmonary hypertension. The conference had a unique design. Each session had two to three didactic lectures followed by three case studies or research papers presented by young paediatric cardiology fellows.
- The symposium was opened with a welcome note from Dr Snehal Kulkarni and Dr Prashant Bobhate. This was followed by a keynote lecture given by Professor Sheila Glennis Haworth CBE, University College London, UK, discussing advances in diagnosis and management of paediatric pulmonary arterial hypertension (PAH) over the last five decades.
- This was followed by a presentation on experiences of pulmonary hypertension (PH) registry from the UK by Dr Shahin Moledina, Great Ormond Street Hospital, UK, and Dr Sanjay from Kerala, India. Experience of the first paediatric PH registry from India was presented by Dr Anuj Sharma.
- The day progressed with presentations, including the diagnostic of PH, infective endocarditis (IE) echocardiogram; cardiac catheterizsation, CT angiogram and exercise testing. Towards the end of the day, talks on the assessment and management of PAH in single ventricular physiology were delivered.
- Day 2 started with a session on management of paediatric PAH, which was chaired by Prof Dr. BKS Sastry and Dr Snehal Kukarni. Dr Shahin Moledina presented his experience on upfront combination therapy vs sequential add-on therapy.
- This was followed by talks regarding assessment of PH patients on medial therapy, management of PH and PVD in the intensive care unit, and caring of pulmonary hypertension patients beyond medical management.
- The second session raised awareness on the interventional management of pulmonary hypertension patients and the faculty shared their experience regarding the use of atrial flow regulator, Potts shunt and lung transplant in India.
- The last session of the day consisted of two very useful talks, given by Dr Shahin Moledina and Professor Sheila Haworth, on epigenetic and the future of managing paediatric PH. The conference ended by a vote of thanks by Dr Prashant Bobhate.
- The second event was held in association with the Paediatric Cardiac Society of India during their annual conference at Raipur, India on 13 October 2019. This event had a special focus on humanitarian models of healthcare with an emphasis on developing and sustaining paediatric cardiac programmes in lower and middle-income countries.
- The faculty included Dr Mark Gweling, Dr S. Radhakrishnan, Dr Prashant Bobhate and Dr Shine Kumar. The dedicated pulmonary hypertension session, which featured three lectures followed by three interesting case presentations by young fellows.
13 October 2019 - Paediatric Cardiac Society, Raipur, India
We have planned a two-day symposium, which is going to be co-sponsored by the PVRI and the international faculty for the same are Professor Paul Hassoun, Johns Hopkins University Medical School, USA, and Professor Michele D’Alto, Ospedale Monaldi, Italy.
The conference, which is set to be held in Mumbai, is aimed at physicians, rheumatologists, pulmonologists and cardiologists interested in managing pulmonary hypertension. More information will be published on the PVRI website.
- 2021 Annual Report
- 2009 - 2021 Activites
- 2020 Annual Report
- 2019 Annual Report
- 2018 Annual Report
- 2017 Annual Report
- 2016 Annual Report