While certain southern states in the country have initiatives in place for supporting patients with rare diseases, the Centre needs to take a more serious note of the issue, especially regarding a sustainable funding mechanism for Group 3 rare disease patients in India.
With the Union Ministry of Health & Family Welfare likely to finalise the long pending National Policy on Rare Diseases and notify it by March 31, serious concerns are now being raised by patients and support societies that the revised policy may meet the same fate as the earlier National Policy for Treatment of Rare Diseases 2017 without any provision to support the treatment of patients diagnosed with Group 3 disorders like lysosomal storage disorders (LSDs).
Patient advocacy groups like the Organisation for Rare Diseases India (ORDI) and Lysosomal Storage Disorders Support Society (LSDSS) are concerned that the Union Ministry’s proposed crowdfunding mechanism may be inadequate, just like the provisioning under the umbrella scheme of Rashtriya Arogya Nidhi (RAN), to provide immediate treatment support to patients with these life threatening conditions—categorised as Group 3 disorders—and particularly those for which Drugs Controller General of India (DCGI) approved therapies are available.
According to patients who have been long awaiting support to start treatment, the Union of India should make immediate necessary provisions for all orphan diseases, as has been done by many other countries.
In the absence of a National Policy on Rare Diseases, a few states in the south have sought support from the Union of India to provide a matching grant in order to sustain the ‘proof of concepts’ shown in providing the much-needed funding support to patients diagnosed with life-threatening rare disease conditions, including LSDs.
Group 3 disorders are a category of rare diseases like Pompe disease, Gaucher disease, Fabry disease and MPS I which are serious, chronic, debilitating and fatal disorders, often requiring long-term, specialised treatment and chronic management and often causing severe handicaps and a catastrophic impact on the entire family. This group of rare diseases particularly impact children, causing 35% of deaths before age 1, 10% between the ages of 1-5 years and 12% between 5-15 years.
Karnataka has been engaged with this programme for close to five years now, providing treatment support to such children. Karnataka has reportedly spent around Rs 40 crore on providing treatment and other life support to the patients diagnosed with rare diseases.
Kerala and Tamil Nadu have also allocated funds from the state exchequer to provide life-saving therapies to a few of these children. In September 2020, the Kerala state government started an initiative to enrol two toddlers suffering from Pompe disease for the life-saving Enzyme Replacement Therapy (ERT) at the Government Medical College, Kozhikode. The infusion therapy was started following an order by a division bench of the Kerala High Court hearing a writ petition filed by the patient advocacy group LSDSS, set up to fight the cause of patients suffering from rare diseases across the country. Under the order of the Kerala High Court, the Centre allotted an amount of Rs 1.5 crore while the state sanctioned another Rs 50 lakh for the treatment of the two patients. Interestingly, members of the Kerala High Court Advocates’ Association, following an appeal by the High Court, also mobilised an amount of Rs 5 lakh for the treatment of the rare disease patients.
As for Tamil Nadu, in March 2020, the Madras High Court directed the Centre to pay Rs 4.4 crore for the treatment of patients with rare disease patients in the state. In the same order, the High Court also instructed the Tamil Nadu government to allocate Rs 5 crore for the treatment of the 11 rare disease patients in the state following a public interest litigation filed by the Delhi-based LSDSS in the Madras High Court, seeking financial aid from the government for the treatment of rare disease patients in the state of Tamil Nadu.
The health departments of each of the three states have also written to the Union of India to support the initiative by providing matching grant in order to provide sustenance to the programme besides allowing a scope to expand the treatment support to other eligible patients awaiting funding support.
With Rare Disease Day celebrated worldwide on 28 February each year to raise awareness about the issue, it has been sincerely requested that the government address the urgent need for a sustainable funding mechanism for Group 3 rare disease patients in the country.
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COVAXIN PRODUCTION TO INCREASE TO 10 CRORE DOSES PER MONTH BY SEPTEMBER
New Delhi: The Centre on Friday said that it is taking steps to boost production of indigenous Covid-19 vaccines, and the production capacity of Bharat Biotech’s Covaxin will increase 6-7 times by July. The government is taking steps under Aatmanirbhar Bharat 3.0 Mission Covid Suraksha to accelerate the development and production of indigenous vaccines. The Centre’s Department of Biotechnology is providing financial support as grant to vaccine manufacturing facilities to enhance their production capacities, a release said.
“The current production capacity of indigenously developed Covaxin vaccine will be doubled by May-June 2021 and then increased nearly 6-7 fold by July-August 2021 i.e increasing the production from 1 crore vaccine doses in April 2021 to 6-7 crore vaccine dose/month in July- August. It is expected to reach nearly 10 crore doses per month by September 2021,” it said.
DR HARSH VARDHAN REVIEWS HEALTH FACILITIES AT AIIMS TRAUMA CENTRE
New Delhi: In the wake of a massive spike in Covid-19 cases during the second wave, Union Health Minister Dr Harsh Vardhan visited AIIMS to review the facilities available at its Trauma Centre, including the availability of oxygen for the Covid patients. In the review meeting, AIIMS director Dr Randeep Guleria and other doctors were present.
“The implementation of Covid-appropriate behaviour is the biggest challenge before us. People have become casual during the second wave. We are doing everything to speed up vaccination and bring more vaccines into the country. We have already given ventilators to the states and they are not demanding more because they are not able to use the current ones because of lack of space. In the last week we took many decisions to strengthen the supply of oxygen on the same dynamic pattern as we did last year,” Dr Harsh Vardhan said.
NINE COVID TIPS TO KEEP IN MIND THIS NAVRATRI
The ongoing Navratri celebrations in India are nine holy days when the nine incarnations of Goddess Durga are worshipped. In the spirit of the occasion, senior neurosurgeon at AIIMS Dr Deepak Gupta shared nine important tips to remember during the current Covid-19 ‘wave’ so people can be better equipped in the fight against the infection.
DON’T TAKE STEROIDS FOR MILD CASES
Steroids dexamethasone, hydrocortisone and MPA may have some benefit, but they are only useful for patients who are on oxygen therapy or ventilator support. Don’t give the patients steroids early or in the first week of the course of the infection. More importantly, don’t use them for mild cases as they might do more harm. Avoid steroids in case of asymptomatic and just RT-PCR positive cases.
REMDESIVIR CAN BE EFFECTIVE IF GIVEN EARLY
Remdesivir with or without Baricitinib can be effective if administered within the first ten days of the illness for patients on ventilator support, non-invasive ventilation or HFNC. It can speed up the time taken for recovery but has no effect on mortality.
WHEN TO USE ANTICOAGULANTS
Anticoagulants (LMWH) followed by oral anticoagulants (Apixaban for three weeks) are useful if D-dimer is high.
PLASMA THERAPY MIGHT NOT BE AS BENEFICIAL
Plasma therapy has no benefits. If at all, plasma must be given within the first three days of the infection from a donor who has very high antibody titers.
OXYGEN THERAPY IS RECOMMENDED
Oxygen therapy, HFNC or ventilator support is highly recommended, if levels of oxygen saturation fall in a Covid patient.
KNOW WHICH MEDICINES MAY BE USEFUL FOR COVID
Inhaled nebulised interferons may be useful, if available. Favipiravir can also improve time taken for clinical cure and help in the cessation of viral shedding by two or three days in mild to moderate cases. MoAb can be used in mild but high-risk cases as it helps in recovery but it is very expensive.
TAKE NOTE OF WHAT DOES NOT WORK FOR COVID
Antibiotics like azithromycin and doxycycline, antivirals like lopinavir, HCQS (chloroquine), ivermectin, and vitamins are not useful for treating Covid-19. Tocilizumab (IL-6 antagonist) is not effective for preventing death in moderate or severe cases and has a risk of sepsis. If one does use it, take only one dose of 400 mg (but only in select cases).
YOUR IMMUNITY MIGHT BE ENOUGH
A majority of patients are improving on their own and developing body immunity, without any treatment. In India, with over a million cases being reported in the last year and the vaccination drive running at its best, people might be likely to achieve natural herd immunity soon.
OPT FOR THE VACCINES
The vaccines available for Covid-19 in India—Covaxin and Covishield—are recommended for all. Two doses are to be taken with a gap of minimum four weeks between them. The Sputnik V is also in the coming, while the Pfizer and Moderna vaccines are available elsewhere.
The novel coronavirus is going to keep spreading and infect everybody it possibly can, until the vaccines can protect everyone or the population develops natural herd immunity. Until then, it would be wise to practise Covid-appropriate behaviour like wearing masks (preferably the N95 kind) washing hands, distancing from each other, and avoiding any unnecessary travel.
Illegal vaccination is a big concern: Top doctors
Healthcare experts say that black marketing of Covid vaccination is happening and people are getting vaccinated by showing false comorbidity certificates.
Who is responsible for resurging Covid-19 cases? How is black marketing of vaccination taking place? Top doctors and health experts—Dr Ishwar Gilada, consultant in HIV and infectious diseases, secretary-general of People’s Organisation and The Organised Medicine Academic Guild of India, Dr Anjan Trikha, chairman of Clinical Managerial Group Covid sector at AIIMS, Dr Dhiren Gupta, senior consultant and paediatrician at Sir Ganga Ram Hospital—answer all this and more.
Q. Who is responsible for the explosive second Covid-19 wave?
Dr Trikha: You, me and the citizens of the country are responsible for this surge. A lot of people seem sick and tired of it and have taken things for granted and just don’t realise its implication. Although the side effects or the gravity of the disease is less compared to the last time, the numbers are increasing, ICUs are getting full. There’s no bed available in Maharashtra, Pune is a standing example, Nagpur is another example, and Delhi is not far off. People have to realise that we might have to come back to the same level of precautions that were there last April or May and then only we can beat it. The positive thing is that more and more people are getting vaccinated we presume that will lead to some kind of immunity amongst them but people have to keep taking precautions.
Q. Why have people taken norms and guidelines for granted?
Dr Gilada: I think our people didn’t expect the second or third wave to come. If you have seen a second or the third wave anywhere in the world, the second wave was stronger than the first wave and the third wave is always stronger than the first and second wave put together. So, we are going to also have a third wave, we are not going to stop at the second wave only. A good thing about the second wave is that it is a highly infectious virus but less lethal.
This time, people are not thronging the hospitals so only those who require hospitalisation are going to the hospitals and therefore doctors can concentrate on them. Otherwise, earlier as soon as people were getting tested positive, they would lock the beds in hospitals so there was a lot of shortage of beds at that time.
About 15 days back Maharashtra was reporting 70% cases; currently, it is reporting 58% cases that means a 12% gap is taken by other states. What happens is, in Maharashtra, the cases are increasing at 10% every day or every two days there are 4,000 to 5,000 cases. Around 15 days back, there were only 44 cases in a day in Bihar and Uttar Pradesh was reporting 126 cases in a day. Now cases in UP have gone up 10 times and cases in Bihar have gone up 8 times in just two weeks. So, it doesn’t take much time for the small numbers to become big numbers.
Look at the people who are masking, they are not covering their nose or mouth, if they want to talk they take off the mask. We need to change the attitude of the people. Most importantly we have always been blaming young people saying that young people are responsible for carrying the infection from society to home, home to society but if only blame game is there we are not going to solve the problem. I have worked in HIV for 35 years and know that blaming young people was a wrong strategy. Set a centre stage of programming, prioritising them is the strategy so now also we need to prioritise the young population all over. Programmes should be young people-centric and make them responsible for their own generation, the next generation and the senior generation. If they will be responsible only then we can control the pandemic.
Last but not least, the vaccine is to prevent the third surge, not the second surge. We cannot prevent the second surge through vaccination.
Dr Gupta: I’m a clinician, though I’m a paediatrician, last year I managed around 2,000 plus adult patients online and I am taking care of the adult ward now. In the past six days, I have gotten a lot of adult Covid calls especially doctors who usually call me to get treated by me as I am an infectious disease expert. Our pace of vaccination is very slow, at this time last year our 30% of staff got infected including our fellows, resident doctors, nurses so 30% of the beds were occupied by our staff. Now, at present none of those people who got infected and later got vaccinated and have probably been exposed to the virus. But even if they are infected, they are not spreaders or super spreaders. As per my experience over the past 15 days in Delhi, probably hospitals seem safer as everybody is vaccinated as compared to last year when hospitals became the hub.
I found that the PGI dean got infected despite two vaccination doses. Let’s be responsible, not only as a citizen but as a scientific person, a doctor, and as a community person. People think that they are young and won’t get affected so they are taking the disease too lightly and are spreading it. They’re not concerned about Covid appropriate behaviour. Also, they think vaccination is meant for them. Recently, our Health Minister has said that we need not vaccinate everybody in due course of time but I think we need to vaccinate everybody in due course of time.
Q. Do you think that if we vaccinate children, then it will become easy to get herd immunity?
Dr Gupta: Children may not get a severe disease but they are spreaders and what I found, as I closely monitor the families and paediatric patients, grandparents are very closely attached to their grandchildren. So, we need to vaccinate all populations and that should be the strategy probably.
As for vaccination, my feeling is very clear. Firstly, we should pitch in all the doctors whether they are MBBS, MD or final-year students. Doctors should pitch in to vaccinate in their respective clinics and we should not be rationed, rationing should not be there that only you can charge Rs 50 only, you can charge Rs 100. Let it be open.
Q. Do you think mass vaccination is a solution?
Dr Trikha: I feel that looking at the number of people and their general behaviour in the society, how much we respect our loss, how much we respect the basic hygiene of our city, considering all these it is going to be a very tough call. I sincerely think we do a good job if people do not overcrowd places. Vaccination is not the only issue the government has to think about, they have to think about elections and after the election results, you will see what will happen. The issue of vaccinating children was brought up but children cannot get vaccinated as there is no data to support that the vaccine has been used on children in the trials. Only two studies have been started in the US where they are taking care of children between 14 to 17 because as per international definitions you can have a 17-year-old vaccinated and he comes into the subgroup of a child. Unless you have data, you don’t know what will happen and we need not start vaccinating children unless we think that it is pretty safe. Vaccination has to be voluntary. We have to be persistent about vaccination and I’m sure things are improving. Vaccinating children is still a far-off thing. There was a lot of controversy regarding pregnant women that is settling down. Mass vaccination doesn’t seem like a viable solution
Q. Are we getting reinfection cases also because there are a lot of covid patients?
Dr Gilada: Whether you get infected and develop antibodies or whether you take the vaccine and develop antibodies, the antibodies will last a maximum of six to eight months or maybe 10 months and that is very important even from the vaccination point of view. If the vaccination effect is going to last only for eight to ten months that means whatever number of people we need to vaccinate that entire thing has to be completed in eight to ten months. We have only six to seven months whatever targeted people are there may be 60,00,00,000 70,00,00,000 at two doses that is 1, 20,00,00,000 process has to be finished within six to eight months and if it is not done then all of second round of the vaccine has to be repeated. Similarly, those who were infected six to eight months back are getting reinfected and that is also possible currently. There are new variants and strains, there are people who are fully vaccinated and despite that, they are getting infected. You should know that the vaccination will not work on 30 to 40% of people, so despite getting vaccinated that person will still get infected and there cannot be news on that but because of social media and electronic media such news are spread and therefore people are not taking the vaccine.
The most important thing is also to wrap up the vaccination. We need 24×7 vaccination, we should have the vaccination at private and public hospitals, at mobile clinics, and at workplaces. Initially, we did not understand whether the vaccine will give a lot of severe reactions or not therefore we were asking people to wait for half an hour to prevent overcrowding in that waiting area. People who are just vaccinated can get infected from next door people so we need to change all those things in light of currently available experience which is approved as an emergency authorisation. Black marketing is happening in terms of vaccination as people are showing false comorbidity certificates to get vaccinated. Some vaccination centres are even keeping a doctor there who is giving false comorbidity certificates. How do you confirm the documentation? You cannot see comorbidity; anybody could say they’ve it. No certification can be authentic.
WORK PERFORMANCE MAY BE AFFECTED BY EATING LATE NIGHT SNACKS
Time to quit eating at night? According to the findings of a new study, unhealthy eating behaviours at night can make people less helpful and more withdrawn the next day at work.
The findings of the study were published in the Journal of Applied Psychology. “For the first time, we have shown that healthy eating immediately affects our workplace behaviours and performance,” said Seonghee “Sophia” Cho, corresponding author of the study and an assistant professor of psychology at North Carolina State University.
Cho added, “It is relatively well established that other health-related behaviours, such as sleep and exercise, affect our work. But nobody had looked at the short-term effects of unhealthy eating.”
Fundamentally, the researchers had two questions: Does unhealthy eating behaviour affect you at work the next day? And, if so, why?
For the study, researchers had 97 full-time employees in the United States answer a series of questions three times a day for 10 consecutive workdays. Before work on each day, study participants answered questions related to their physical and emotional well-being.
At the end of each workday, participants answered questions about what they did at work. In the evening, before bed, participants answered questions about their eating and drinking behaviours after work.
In the context of the study, researchers defined “unhealthy eating” as instances when study participants felt they’d eaten too much junk food; when participants felt they’d had too much to eat or drink; or when participants reporting having too many late-night snacks. The researchers found that, when people engaged in unhealthy eating behaviours, they were more likely to report having physical problems the next morning. Problems included headaches, stomachaches and diarrhea.
In addition, when people reported unhealthy eating behaviours, they were also more likely to report emotional strains the next morning – such as feeling guilty or ashamed about their diet choices. Those physical and emotional strains associated with unhealthy eating were, in turn, related to changes in how people behaved at work throughout the day.
Essentially, when people reported physical or emotional strains associated with unhealthy eating, they were also more likely to report declines in “helping behaviour” and increases in “withdrawal behaviour.”
Helping behaviour at work refers to helping colleagues and going the extra mile when you don’t have to, such as assisting a co-worker with a task that is not your responsibility. Withdrawal behaviour refers to avoiding work-related situations, even though you’re at your workplace.
The researchers also found that people who were emotionally stable suffered fewer adverse effects from unhealthy eating. Not only were emotionally stable people less likely to have physical or emotional strains after unhealthy eating, their workplace behaviours were also less likely to change even when they reported physical or emotional strains.
With ANI inputs
WHY SOME PEOPLE ARE HUNGRY ALL THE TIME
Some people feel they are hungry all the time. A new research has come up with an explanation. It says that people who experience big dips in blood sugar levels, several hours after eating, end up feeling hungrier and consuming hundreds of more calories during the day than others.
The research team from King’s College London and health science company ZOE (including scientists from Harvard Medical School, Harvard T.H. Chan School of Public Health, Massachusetts General Hospital, the University of Nottingham, Leeds University, and Lund University in Sweden) found why some people struggle to lose weight, even on calorie-controlled diets, and highlight the importance of understanding personal metabolism when it comes to diet and health.
The research team collected detailed data about blood sugar responses and other markers of health from 1,070 people after eating standardised breakfasts and freely chosen meals over a two-week period, adding up to more than 8,000 breakfasts and 70,000 meals in total. The standard breakfasts were based on muffins containing the same amount of calories but varying in composition in terms of carbohydrates, protein, fat and fibre. Participants also carried out a fasting blood sugar response test (oral glucose tolerance test), to measure how well their body processes sugar.
Participants wore stick-on continuous glucose monitors (CGMs) to measure their blood sugar levels over the entire duration of the study, as well as a wearable device to monitor activity and sleep. They also recorded levels of hunger and alertness using a phone app, along with exactly when and what they ate over the day.
After analysing the data, the team noticed that some people experienced significant ‘sugar dips’ 2-4 hours after this initial peak, where their blood sugar levels fell rapidly below baseline before coming back up.
Big dippers had a 9 per cent increase in hunger, and waited around half an hour less, on average, before their next meal than little dippers, even though they ate exactly the same meals.
Big dippers also ate 75 more calories in the 3-4 hours after breakfast and around 312 calories more over the whole day than little dippers. This kind of pattern could potentially turn into 20 pounds of weight gain over a year.
Dr Sarah Berry from King’s College London said, “It has long been suspected that blood sugar levels play an important role in controlling hunger, but the results from previous studies have been inconclusive. We have now shown that sugar dips are a better predictor of hunger and subsequent calorie intake than the initial blood sugar peak response after eating, changing how we think about the relationship between blood sugar levels and the food we eat.”
Professor Ana Valdes from the School of Medicine at the University of Nottingham, who led the study team, said: “Many people struggle to lose weight and keep it off, and just a few hundred extra calories every day can add up to several pounds of weight gain over a year. Our discovery that the size of sugar dips after eating has such a big impact on hunger and appetite has great potential for helping people understand and control their weight and long-term health.”
Comparing what happens when participants eat the same test meals revealed large variations in blood sugar responses between people. The researchers also found no correlation between age, bodyweight or BMI and being a big or little dipper, although males had slightly larger dips than females on average.
There was also some variability in the size of the dips experienced by each person in response to eating the same meals on different days, suggesting that whether you are a dipper or not depends on individual differences in metabolism, as well as the day-to-day effects of meal choices and activity levels.
Choosing foods that work together with your unique biology could help people feel fuller for longer and eat less overall. With ANI inputs
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