Fiinovation Reviews: Need of Stringent Policy on Rare Diseases

In the year 2013, a petition was filed in Delhi High Court by the seven-year old Mohammed Ahmed suffering from the rare disease Gaucher. It is a hereditary disorder which is caused by the absence of enzyme which breaks down fat and releases energy. The absence of this enzyme leads to fat building all over the body and patients suffer from bone pain and anemia. In some cases, it may also lead to death. Although, this disease can be treated through the replacement therapy of enzymes and the person can lead a normal life under all medications and precautions, however, it can never be completely cured. The cost of therapy is Rs. 6 lakh per dose and has to be administered every month till the patient is alive. Since, his father is a rickshaw-puller and earns daily wages for survival he knocked the door of High Court for help.

Gaucher is one of the 7,000 rare diseases that afflict less than 6% of the global population. Looking at the rare phenomenon of this disease, pharmaceutical companies don’t consider it as an economically viable drug and end up pricing them as high as possible to derive profits. Even these companies don’t invest much on the research of the Orphan Drugs making them almost inaccessible for the weak and marginalised sections of the society.

In order to encourage the pharmaceutical companies to stimulate research for the treatment of rare diseases, the Orphan Drugs Act was passed by the US government in 1983. The law offered different incentives like smaller clinical trials, higher rates of regulatory success, extended exclusivity and tax rebates. Laws on similar line have been replicated in other countries such as European Union, Japan and Australia making it economically viable and commercially attractive for investing in the Research and Development (R&D) of the rare diseases. However, these companies ignore the incentives offered by the government and sell the orphan drugs at inflated prices. Rituximab, an orphan oncology drug, is one such drug in this category which is also the second highest selling drug in the world. The patients of developed country have higher per capita income and also governed by good government health policies hence they can afford them whereas it is completely unaffordable for the patients of developing countries considering their economic status and flaws present in the healthcare policies.

The Delhi High Court gave full attention to the case of Mohammed Ahmed causing lot of stir and scrutiny in the existing healthcare policies governing the nation. Before giving his judgment, Justice Manmohan analysed many other cases which have proved that the right to health and access to healthcare is implicit in Articles 21, 38 and 46 of the Indian Constitution.

He concluded that “every person has a fundamental right to quality health care – that is affordable, accessible and compassionate.” While recognizing the fact that every citizen cannot expect to receive free medical treatment at the state expense he also held the government responsible for not devising favorable policies for ensuring that every citizen can afford the treatment of rare diseases.

The court suggested the government to increase investment in the healthcare sector and formulate best practices and polices related to the treatment of rare diseases. It also confirmed that the act of financial aid treatment of rare diseases will be qualified as a CSR activity. It also directed the state government to arrange treatment for Mohammed Ahmed free of cost at AIIMS whenever he requires it, as per his constitutional right.

Learning lessons from this case, Karnataka became the first state in India to release a Rare Diseases and Orphan Drugs Policy. It recommended to implement the preventive and carrier testing, which is a means of reducing morbidity and mortality. Considering the fact that around 80% of the rare diseases` have genetic connection, it also suggested to the pharmaceutical companies to use genetic testing for accelerating the identification of the critical genes involved in rare diseases.

The state also highlighted about the flaw present in the Insurance Laws of India due which often acts as huge disadvantage for the patients suffering from the rare disease in India. The private insurance companies of India consider the genetic disorders as pre-existing conditions, hence, on that basis doesn’t provide any insurance cover for the same. Since, most of the rare diseases are genetic in nature; hence patients don’t get any support from the existing insurance policy.

The state emphasised on the awareness programmes to combat delay in diagnosis and treatment. It also called for the enactment of an orphan drugs statute to allow for tax breaks, funding and exclusive marketing rights as incentives for orphan drug discovery.

The policy has requested the IRDA (Insurance Regulatory and Development Authority) to re-consider this exclusion from the above mentioned laws and at least provide basic coverage of rare diseases at reasonable premiums.

Fiinovation recommends the other states of India to follow the footsteps of Karnataka to ensure every citizen of India has access to affordable healthcare facilities. The state-led PSUs and private companies can utilize their CSR funds to undertake healthcare initiatives involving rare diseases for extending support to the weak and marginalized sections of the society.

 

By Manisha Bhatia

Media & Communications, Fiinovation

 

Advertisements

Budget Highlights – Education Sector

The much awaited Union Budget 2017 was presented by the Finance Minister Arun Jaitely on 1st February 2017. Education is one of the key components for driving economical growth and acts as impetus for government schemes such as Make in India, Digital India and Skill India. Government should devise schemes to boost other sectors such as Automation, Artificial Intelligence, Textile, Energy etc. apart from focusing on the IT and applied IT sectors.

It is extremely important to pay attention on improving the quality of educational institutes for creating skilled workforce, ready to join the industry. The key budget highlights of the Education sector are as following –

  • In year 2017, citizens will gain access to SWAYAM, a massive open online courses (MOOC) platform. This education portal, will be introduced with 350 online courses and will be providing high quality e-content to all the colleges and universities free of cost.
  • Job-creating packages for textile sector
  • Good quality institutions which will possess better quality and education
  • 100 international centres will be launched across the country for providing assistance to the youth seeking jobs outside India
  • PM Kaushal KendrasPM Kaushal Kendras to be extended to 600 districts
  • 5 crore youth to be trained under Sankalp programme launched by government
  • Quality and market relevance will be noted in vocational training
  • Special scheme for employment has been launched in the textile sector
  • National Testing Agency will be conducting major entrance examinations
  • CBSE will be freed from conducting examinations, and will focus majorly on academics
  • Skill strengthening to be implemented from this year with a budget of Rs 2,200 crore
  • Greater autonomy will be provided to major institutes
  • UGC will be reformed for higher education, colleges and institutions will give more autonomy
  • Two new AIIMS to be opened in Jharkhand and Gujarat
  • Big employment opportunities to come up in tourism sector
  • Government will provide education through digital platform and the country will be turned into an electronics hub
  • Additional opportunities for employment of women to open up through model shops and establishment bill
  • The BHIM app has been downloaded 17 million times, and special cash back scheme for BHIM users

The main highlight of the budget in education sector was the introduction of 350 online courses and big employment opportunities to be introduced in textile and tourism sectors.

By Manisha Bhatia

Media & Communications, Fiinovation

FIINOVATION OBSERVES – WORLD SOCIAL JUSTICE DAY

World Social Justice Day is observed annually on 20th February for promoting efforts to tackle global issues such as poverty, unemployment, gender equality and exclusion to create an equitable society for all. It promotes social justice, solidarity, harmony & equality for marginalised communities, women and immigrants. The theme of World Justice Day in 2017 is “Preventing conflict and sustaining peace through decent work”. On this day many organisations including the United Nations and International Labour Organisation present plans and issue statements regarding the promotion of social justice. Additionally, campaign groups, trade unions and volunteers are also invited to mark their support on this day.

In 2007, the World Day of Social Justice was introduced in the UN agenda. It urged governments to focus on three important aspects;

a) reaffirmation of commitments made in Geneva Development Summit 1995,

b) recalling the commitment to promote national and global economic systems based on the principles of justice, equity, democracy participation, transparency, accountability and inclusion and

c) reaffirming the commitment made in the 2005 World Summit Outcome to full and productive employment and decent work for all, including for women and young people.

Keeping focus on these aspects will remove the barriers that people face because of their gender, age, race, ethnicity, religion, culture or disability.

Equality is the basic fundamental right of every society and in order to achieve the same, governments have created a framework for action to promote social justice at national, regional and international levels. The governments accept the fact that holistic economic growth can be achieved only by promoting equitable distribution of income, resources and providing everyone an equal opportunity for growth and development irrespective of race, ethnicity, gender, religion, culture or disability. They promote the belief that only social justice can help in achieving the peaceful coexistence within and among the nations.

United Nations also promotes social justice as part of their global mission to achieve equality for all. The recent adoption of the Declaration on Social Justice for a Fair Globalization by the International Labour Organisation is one example of the UN system’s commitment to social justice. The Declaration focuses on guaranteeing fair outcomes for all through employment, social protection, social dialogue, fundamental principles and rights at work.

Fiinovation through its association with corporations for CSR and Sustainability initiatives, have always promoted social justice. It believes that there are serious challenges in front of us, including financial crises, insecurity, poverty, exclusion and inequality within and among societies and considerable bottlenecks to further social integration and full participation in the economy. The road ahead would be to incorporate social integration activities within the social development programmes to boost equitable growth in the country.

“With exclusion and inequality on the rise, we must step up efforts to ensure that all people, without discrimination, are able to access opportunities to improve their lives and those of others.” – Former Secretary-General Ban Ki-moon

By Manisha Bhatia

Media & Communications, Fiinovation

FIINOVATION OBSERVES: WORLD CANCER DAY

World Cancer Day is observed all over the world on 4th February to spread awareness about cancer, its diagnosis, detection and treatment at an early stage. The day commemorates the contributions and efforts made by WHO, United Nations, NGOs and governments. It also formulates new strategies to intensify the fight against cancer. The day was founded by the Union for International Cancer Control (UICC) for supporting the goals of the World Cancer Declaration written in 2008.

As per the World Health Organisation (WHO), every year around 8.8 million people in the world succumb to death due to the disease. Hence, the main goal of observing the World Cancer Day is to create awareness and fight against the disease to reduce the number of cases and deaths due to Cancer.

This year the theme of the World Cancer Day is #WeCanICan. It is the second year of the ongoing campaign, aimed to unite people for intensifying fight against the disease. Experts believe that proactive actions can help in saving millions of preventable deaths (around 4 million people) by spreading awareness and education about the disease through rallies, marches, initiatives, seminars and social media pressing governments and individuals across the world to take effective actions. For example, #NoHairSelfie movement was started to encourage people for shaving off their heads either physically or virtually in order to support people undergoing treatment for cancer.

The main event is organised by UICC every year which involves the participation of various NGOs, research agencies, government representatives, medical experts and individuals. The idea is to target common people and educate them about the leading causes of Cancer such as chewing tobacco, smoking ciggrattes, obesity, unhealthy food habits, lack of physical activity, sexual transmission of HPV-infection, genetic factors, overexposure to sunlight etc. They are also informed about the vaccination method against both the human papilloma virus and hepatitis B virus. Experts present encourage people to adopt healthy lifestyle, practice balanced diet and weight management in order to reduce the risk of occurrence of the deadly Cancer disease.

Another important aspect of celebrating this day is to end stigma and various myth related to the disease prevalent in society. Several cancer survivors have started their own foundations and are now engaged in cancer care treatments. Yuvraj Singh’s case is one famous story from India where the charismatic cricketer after fighting the deadly disease is back on the field scoring centuries. Many other celebrities who have fought cancer have came out creating awareness about the disease.

On this day, Fiinovation urges businesses to develop diagnostic centers across the country under CSR to help early diagnosis and treatment which is essential in the fight against cancer.

“On World Cancer Day, we have an opportunity to collectively examine cancer control strategies to identify winning formulas that will accelerate progress. The goal for all of us is to ensure fewer people develop cancer, more people are successfully treated and that there is a better quality of life for people during treatment and beyond.” – Heather Bryant, VP, Cancer Control, Canadian Partnership Against Cancer

By Manisha Bhatia

Media & Communications, Fiinovation

MOBILE APP HELPING WOMEN IN SLUMS FOR SMOOTH PREGNANCY

As per the estimates by WHO (World Health Organisation), 5,29,000 maternal deaths occur in the world every year. Out of these around 1,36,000 or 25.7% of total deaths happen in India. Every five minutes, one Indian woman die during pregnancy and child birth.

In a statement released by WHO, it was stated that, “Two-thirds of maternal deaths occur after delivery and postpartum hemorrhage being the most commonly reported complication. The incidence of emergency postpartum hysterectomies is about 83/100,000 with a maternal mortality of 17.7 per cent and a perinatal mortality of 37.5 per cent”.

India carries the burden of around 17 per cent of the global maternal deaths and post-partum haemorrhage, accounting for as high as 37% of the maternal deaths. This situation will prove to be a major hindrance for India in achieving the goal of a healthy and developed nation.

Majority of women dying and facing complications during pregnancy and childbirth are from the lower income group and neither they are aware about reproductive health nor have the money to consult the doctors or afford appropriate healthcare facilities.

In order to improve the healthcare conditions of pregnant women for safe child birth, better health post delivery, the Maharashtra based NGO has started free mobile voice call service known as mMitra for giving free consultation to the women during their pregnancy. A voice message has been regularly sent to the enrolled women, reminding them continuously about the mandatory medicines, tests and scans required during their pregnancy.

Nearly 1.30 lakh women from the Nalasopara slum area of Maharashtra have enrolled for the service. Women have enrolled for this service and were guided through short voice messages like regular health checkups, ultrasounds, diet, etc. Many women have claimed multiple benefits from the service like better health, “uneventful” delivery which means without any complications such as diabetes, high blood pressure or bleeding during the childbirth. Inspired by the benefits, they are also encouraging the many other women in their area to register for the services.

The initiative is the brainchild of Dr. Aparna Hegde, alumna of a Sion Hospital in Mumbai. “The success of the initiative shows that there was a great need for an information medium. Women are now demanding iron and folic acid from hospitals, which was always available for free but they had no knowledge about it.

During a study conducted by the same NGO it found that there is a 36% increase in the knowledge of women listening to the voice messages consistently and 47% increase in women knowing about the three family planning methods. Looking at the success and popularity of the programme, the NGO is planning to extend services to other states of India like Delhi, Assam, UP, etc. to educate and help women during pregnancy and childbirth as well as maintain good maternal health post childbirth.

Fiinovation urges the leading hospitals and health consultancies to extend support for such initiatives through their CSR funds and technical expertise for creating a huge impact in the lives of millions of young women, focused on reducing maternal mortality rate and achieving universal access to the reproductive health care.

Manisha Bhatia


FIINOVATION REVIEWS: WHY INDIA NEEDS TO REVISE ITS ABORTION LAWS

The recent landmark judgment given by the Supreme Court of India allowing a woman to terminate her 24-week old pregnancy has opened up the doors of discussion on obsolete pregnancy laws, need to increase awareness about abortion and change the pregnancy laws as well as end stigma prevalent in the country. On Monday, Supreme Court relaxed the 20-week legal ceiling on abortion, allowing a woman to abort her 24-week baby diagnosed with Anencephaly, a life-threatening congenital defect in which a baby is born without the parts of the brain, skull and scalp.

India’s Medical Termination of Pregnancy (MTP) Act legalises abortions upto 20 weeks only under certain circumstances such as threat to mother’s or child’s physical or mental health or if the unborn baby is diagnosed with severe physical or mental abnormalities or both.

As per the data revealed by the Union Ministry of Health & Welfare and World Health Organisation, there are 56 million induced abortions in the world every year from which around 22 million are unsafe abortions. The practice leads to 47,000 deaths and an estimated 5 million women develop some form of disability. In India, 10 women are killed everyday due to abortions as an estimated 6.8 million choose unsafe methods of abortion due to lack of knowledge and laws. Being responsible for 8% of the overall maternal deaths, unsafe abortions is the third biggest reason of the women dying due to child-birth related causes in India. Lack of skilled medical staff is also another big reason for women falling to the prey of unhealthy abortion practices. The weak and marginalised section of the society suffers the most due to lack of knowledge and stigma associated with the medical practice.

“Vulnerable groups including women with disabilities or mental health problems, rape and incest survivors and widows and single women who may need more support because of the tremendous social stigma may prevent them from seeking legal abortion services in the early stage of pregnancy”, says Mumbai-based Dr. Nozer Sheriar, former secretary-general of FOGSI (Federation of Obstetrics and Gynaecologist Societies of India), who was also part of the Union Health Ministry’s expert panel that drafted the amendments.

Looking at the appalling figures and gaps observed in abortion laws, the Union Health Ministry has proposed certain amendments from relaxation in law to increasing the number of skilled workforce. “The amendments are women-centric as opposed to the provider-centric provisions in the MTP Act. The proposed bill aims to give each woman control over decision-making related to her life and body,” said a Union Health Ministry official.

The key changes proposed by the expert panel recommends widening the network of service providers through training so that nurses, village health workers and Auxiliary nursery midwives (ANMs), ayurveda, unani and homeopathy practitioners can use the medical methods to terminate the pregnancies by relaxing the norms from 20-week to 24-week for the “vulnerable” groups who may have delayed in seeking services due to lack of knowledge or stigma. After the completed training, the ANMs can terminate pregnancies upto 7 weeks, nurses and alternative practitioners upto 9 weeks through drugs. However, the surgical abortions can only be done by the registered physicians.

Other proposed amendments include the inclusion of confidentiality clause which will be helpful for the PROCSO (Protection of Children from Sexual Offences) Act, which requires all the pregnancies involving minors should be reported to the police. The clause under the Act states that minors need consent from their guardian before seeking abortion. It also recommends to change the restrictive terminologies and make a uniform law for “women” irrespective of their marital status and changing the preference from “husband” to “partners”.

Fiinovation also supports the proposed amendments as they are in-line with the changing scenarios and will provide incredible benefits to women in advancing their rights on their own bodies and health. The lack of support and relaxation in norms have often forced women to resort to desperate measures falling to unsafe abortion methods leading to numerous health problems.

By Manisha Bhatia

Media & Communications, Fiinovation

India Celebrates – The 68th Republic Day

The Constitution of India came into force on 26th January 1950 and the day is marked as the Republic Day which gave power to the people from the hands of a few. It was in 1930 on January 26th when the most powerful political entity in India, the Indian National Congress declared ‘Purna Swaraj’ opposing the Dominion status offered by the British, suggesting another importance of selecting the date as Republic Day.

The day’s highlight has always been the celebrations at Rajpath before the President of India. The Republic Day Parade in Delhi showcases the nation’s Defence Capability, Cultural and Social Heritage. The celebrations goes on for a period of 3 days and ends with the Beating Retreat conducted on the evening of 29th January.

Being a high profile event, a lot of thought goes into choosing the Chief Guest for the Republic Day Parade. The first Republic Day Parade in 1950 was attended by the Indonesian President followed by the King of Nepal in 1951. In the past two years of the present government, the former US President Barack Obama and French President Francois Hollande were invited with a motive to have the best possible ties with the western powers. This year, the chief guest for the Republic Day is Crown Prince Sheikh Mohammed bin Zayed of UAE. Last year, French troops marched along with the Indian troops in the Republic Day Parade. This time troops from UAE are expected to lead the Parade. Clearly, the focus have shifted towards India’s neighbourhood, especially the Gulf region. The Comprehensive Strategic Partnership which has been spoken about in 2015 will materialise this time with major focus on joint defence production.

With such high profile guests including Prime Minister Narendra Modi and President Pranab Mukherjee at the venue, Delhi is likely to be under ground-to-air security cover with more than 60000 armed personnel keeping a tight vigil. From anti-drone technology to prevention from chemical attacks, the national capital region is expected to be on high alert with Delhi borders being sealed and cars entering being thoroughly checked.

The Republic Day Parade will showcase aerial fly-past by the Indian Air Force with Light Combat Aircraft making its debut in the Parade. The Indian Navy will highlight the indigenously built Kolkata class destroyer along with Kalvari class next generation attack submarines. Audience will also be witness to tableaux from 17 states and union territories and 6 Union Ministries. There will be tribute to Lokmanya Tilak on his 160th birth anniversary with the ‘Swaraj Rath’, other than promotional tableaux of Skill India, Digital India and Beti Bachao Beti Padao which the pet schemes of the central government.

As citizens, the Republic Day enables us to re-think on the lines of our founding fathers who wanted to make this country a sovereign, secular and democratic republic. It is a day to be proud of ourselves who have given each other the constitution by having solemnly resolved our differences and pledging to secure all the citizens of Justice, Liberty Equality and Fraternity. The day reconfirms our faith on the fact that all the power emanates from the people and the political system will always be accountable and responsible to the people of the great country.

Swaraj is everyones birthright, and everyone must have it.

Happy Republic Day

By Rahul Choudhury