Cervical Cancer Awareness Month is here! How aware are you?

Cervical Health Awareness Month.
Cervical Health Awareness Month.

How often have you come across a patient of cervical cancer around you? Chances are, rarely. But reality begs to differ. According to the World Health Organisation (WHO), over six per cent women around the world (including 570,000 new cases) suffered from cervical cancer in 2018. Sadly, the statistics of both the developed and developing countries tell a similar horrifying story. Every day, nine women in the UK are diagnosed with cervical cancer and three lose their battles to life. In the US, nearly 13,000 women are diagnosed with cervical cancer every year, which amounts to an appalling 36 women falling prey every day! Developing countries like India have morbid statistics too. As per a study by National Center for Biotechnology Information, India alone accounts for a quarter of cervical cancer cases globally. Approximately 270,000 women across the world die from cervical cancer yearly, with 85 per cent deaths occurring in low-to-middle income countries. Owing to the gigantic figures, the United States Congress designated January as the Cervical Health Awareness Month.

Most common among women aged around 35 years, cervical cancer has remained, through times, an ignominious reality. However, even more lamentable is the fact that 75 per cent of such cases are actually prevented by cervical screening (or smear tests) and vaccination. Yet, one in four women does not attend this potentially life-saving test because of embarrassment. Some time back as part of the Pink Chain campaign, a study among schoolteachers in India was conducted. It revealed that cervical cancer was the second most common cancer in India. It also identified and assessed the level and impact of awareness programmes in the adoption of safe practices in prevention and early detection. Uneasiness around discussing the topic with friends, family and peers emerged as the main reason behind women not coming forward for tests and treatment.

While cervical cancer rates have dropped significantly within the United States over the past few decades, it still remains a critical global health issue. The high mortality rate for cervical cancer in the developing world is driven by limited access to cervical cancer screening and treatment. Laboratory-based methods used to detect cervical cancer, and the personnel required to perform and analyse them may be unavailable in developing nations. In an alarming finding, it was identified that approximately 90 per cent of deaths from cervical cancer occurred in low- and middle-income countries. Likewise, the ability to treat cervical cancer is highly dependent on access to surgical facilities, chemotherapy agents and radiation equipment.

The high global mortality rate despite having mechanisms to diagnose and treat this cancer is a matter of great concern. Doctors and researchers have time and again emphasised that more awareness programmes need to be run and sustained in order to literate people, especially women, to combat this cancer. Women must be encouraged to speak, walk up to a doctor and get her diagnosed. Reduction in mortality could be induced through a comprehensive approach which includes preventive care, early diagnosis, effective screening and treatment, and follow-ups. Particularly, in countries where screening programmes are not available, identifying cervical cancer at an early stage and providing effective treatment can improve the likelihood of survival. Presently, in many low-income nations, the disease is often not identified until in advanced stages.

Widespread training and awareness programmes run by state governments in partnership with CSR divisions of private firms can also be a way forward in combating cervical cancer. They must be made educated on the initial symptoms of the cancer. WHO Package of Essential non-communicable (PEN) disease interventions for primary healthcare in low-resource settings has guidance on the approach to assessing and referring affected women in the primary care setting. This must be widely publicised through various broadcast channels. In one of its studies, the WHO has concluded that “… screening should be performed at least once for every woman in the target age group (30-49 years) when it is most beneficial; HPV testing, cytology and visual inspection with acetic acid (VIA) are all recommended screening tests;  cryotherapy or loop electrosurgical excision procedure (LEEP) can provide effective and appropriate treatment for the majority of women who screen positive for cervical pre-cancer; “screen-and-treat” and “screen, diagnose and treat” are both valuable approaches.”

Irrespective of the approach being deployed in educating women, the key to an effective programme is reaching the largest proportion of women at risk. Organised screening programmes, comprehensive cervical cancer prevention and control, community education, social mobilisation, vaccination, etc. can go a long way in improving cervical cancer control. Cervical Health Awareness Month is an opportunity to dedicatedly work, for a whole month, towards ensuring that our women remain safe and prevented from this deadly cancer. Let us spread the word around, not only among our female friends but also among our male friends, peers and family so that in case of such diagnosis, every person around must be aware of the next critical steps involved in treating the patient. Let us all be well-equipped for a better tomorrow because prevention is certainly better than cure.

 

Our Alpha Public Release!

Shivom Alpha Public Release
Shivom Alpha Public Release

Back in August, we announced that we would be releasing a platform in order for our community to test and give us feedback on the first iteration of our Alpha product.

After onboarding a wealth of new talent and welcoming Henry Ines to the role of CEO, we felt it time to take a step back and reassess our current position. We realised that many of our competitors, both startups in the blockchain space and traditional genetics companies had spent a significant amount of time streamlining their UI/UX and USPs. It became clear to us that we needed to innovate in an area that’s often overlooked – secure storage. In perfecting such a solution, we would be able to offer our community and competitors alike greater freedom and transparency where the storage and sharing of their DNA data is concerned, having a positive knock-on effect on the direct-to-consumer genetic testing industry.

Months of development later, after several scrum meetings and all-nighters, we’re thrilled to unveil to the community the long-awaited Alpha Release!


A Sleek UI/UX Brand Overhaul

Users will also notice that we’ve greatly simplified our sign-up process, stripping it down to three easy steps:

Select whether you’re a consumer or an enterprise user, before adding general account information (name, DOB, country, etc.)

Complete health and wellness information by answering a range of questions (which, in later releases, will not only help us better assess which products we should provide our audience with, but also improve the search function for organisations seeking particular DNA datasets). Of course, the user will be able to specify whether they wish to be ‘discoverable’ in our Enterprise Search feature.

The final step in the sign-up process is adjusting user permissions – you’ll be able to set search, viewing and contact permissions that are linked to DNA data uploaded onto the platform. We’ve implemented toggle functionality to offer users a more granular experience over categories. For instance, they may choose to only make their data searchable and available to academic research teams over governmental organisations.

DNA Upload & Encryption

As aforementioned, we’ve spent countless hours fine-tuning our secure storage feature whilst ensuring newcomers and users of previous genetic testing kits are provided with a seamless experience for securely uploading their data. If you’ve used another testing service previously, all you need is your genetic information to get started – usually, this is stored in a file with a .vcf extension.

Navigate to the MYDNA page and click on ‘Upload’ to select the requisite file from your device. Once selected, it will be encrypted and subsequently stored on the Shivom platform. In successive releases, expect an even simpler process, where logins for sites like 23andMe or Ancestry can be used in order to directly import data.

Additionally, this page allows you to pre-order home testing kits. Select this option to be added to the pre-order list for the kits, which will be shipped in Q1 of 2019.

 

What’s Next?

Shivom will continue iterating on its product and fleshing out our core features – above all, our work is driven with a focus on security and accessibility. In tandem, we’ll launch numerous upgrades to campaign management for enterprise users and our Enterprise Search function (providing granular filters for organisations seeking out specific data sets, i.e. those from specific regions, associated with certain diseases or conditions, etc.).

For users that wish to share their data with researchers or institutes in the medical field (all whilst being remunerated for their participation), we’ll be rolling out the ability to anonymously provide organisations with datasets within a set timeframe, leveraging blockchain-based payments directly into an integrated wallet accessible via Shivom’s web portal.

Stay tuned for more exciting updates on our roadmap , developments and partnerships in the coming weeks. Go ahead and experiment with the Alpha, and be sure to let us know what you like, what could be improved, and what you’d like to see added in the future via the Intercom feature at the bottom right-hand side of the portal.

Until next time,

The Shivom Team

World Alzheimer’s Awareness Month

World Alzheimers Awareness Month
World Alzheimers Awareness Month

Shivom is helping to make diseases like Alzheimer’s a thing of the past. By creating a secure platform for the storage and sharing of genomic data, Shivom is transforming the precision medicine of tomorrow by allowing researchers and pharmaceutical R&D pipelines access to vital genomic data today. This type of data can help determine an individual’s predisposition to certain diseases, among them Alzheimer’s, and even help in the development of future preventatives and cures.

Shivom’s Chief Scientific Officer, Axel Schumacher published the first proof of whole-genome epigenetic abnormalities in late-onset Alzheimer’s Disease. His report specified that epigenetic drift, or change, that occurs with age may put people at higher risk for developing the disease. The findings suggest that epigenetic drift may be an important driving force in AD pathology and raise the tantalizing question of whether such epigenetic changes could be prevented.

Around the world, 44 million people suffer from Alzheimer’s, a fatal form of dementia. The U.S. is home to 5.5 million of those suffering, among them 200,000 people younger than 65 with early-onset symptoms.

The prevalence of Alzheimer’s increases with each generation, especially as populations live to be older. By 2050, the number of those affected in the U.S. is estimated to quadruple, leaving 14 million with the disease (World Alzheimer Report, 2018).

According to the Center for Disease Control and Prevention, not only are more people getting Alzheimer’s as they age—the disease is becoming deadlier. Between 1999 and 2014, death rates from Alzheimer’s increased 55 percent, and today the disease is the 5th leading cause of death in the U.S. In 2017, caregiving associated with Alzheimer’s cost the U.S. $259 Billion, which is nothing in comparison to the physical and emotional toll the disease takes on its victims and their family members.

Alzheimer’s disease is, paradoxically, unique for both its pervasiveness and its mystery. Despite its ubiquity among U.S. senior citizens, there is still no cure in sight, and much about the disease remains unknown. What clinicians do know is that genetics play a large part in determining an individual’s predisposition to the disease.

The most common gene associated with late-onset Alzheimer’s is the apolipoprotein E (APOE). This gene has three forms: the APOE-e2 variety, which reduces one’s risk for the disease, the APOE-e3 variety, which appears to have no effect on risk, and the APOE-e4 variety or the “Alzheimer’s Gene,” which increases one’s risk.

Every person inherits two APOE genes from their parents—one from their father, and one from their mother. However, inheriting two APOE-e4 genes doesn’t necessarily guarantee that an individual will develop Alzheimer’s. Conversely, some people born without any APOE-e4 genes may also develop the disease. Still, according to a study recently published in Neuron, over 50 percent of Alzheimer’s cases are linked to APOE-e4.

Last year, researchers with the Mayo Clinic also linked APOE-e4 to the newly-termed “Type 3” Diabetes, a form of diabetes in the brain. It’s already well-known that those who suffer from Type 2 Diabetes are more likely to suffer from Alzheimer’s due to reduced blood flow and lack of essential nutrients to the brain. Now, it has been discovered that APOE-e4 interferes with brain cells’ ability to use insulin, causing the cells to starve and die.

Still, clinicians don’t generally test for the APOE genotype among late-onset Alzheimer’s patients. Results can be indeterminate, and the disease can usually be diagnosed without genetic testing by that point.

However, testing early-on for APOE-e4 or other mutant genes associated with early-onset Alzheimer’s, like Amyloid precursor protein (APP), Presenilin 1 (PSEN1), and Presenilin 2 (PSEN2), could help determine with some certainty if an individual will develop the disease before the age of 65.

One common characteristic among those with Alzheimer’s are “amyloid plaques,” which are amyloid-beta peptides that build up in the brain and clump together, leading to the death of nerve cells. As these clumps collect, tau protein malfunctions stick together forming neurofibrillary tangles, creating the types of brain abnormalities commonly associated with Alzheimer’s (Mayo Clinic, 2017).

Imagine how much could be learned about Alzheimer’s through the collection of genomic data worldwide. Researchers could identify more of the unknown genetic mutations that cause amyloid plaques, or even isolate an autosomal dominant gene shared by all Alzheimer’s patients, or sets of genes that increase susceptibility to the disease. This could allow for earlier diagnoses, and perhaps, one day, preventative measures or even a cure.

By creating a secure platform where researchers and pharmaceutical R&D pipelines have access to stored genomic data on a massive scale, Shivom hopes to propel treatment for Alzheimer’s forward, incentivizing genomic donors around the globe to contribute their data toward a future where Alzheimer’s disease is, itself, a forgotten memory.

Shivom is pushing policies for reimbursement of genetic testing

One of the main challenges for the development and implementation of precision medicine is the lack of reimbursement for genetic tests in most countries. There are many examples of clinically useful information available through newly developed genetic tests. While some health insurance plans in the US cover the cost of genetic testing when recommended by a physician, other forms of genome sequencing are usually not included, especially not in the EU and most Asian countries.

Without question, genomic medicine will revolutionize clinical practice in the coming years. As such, it is essential that genetic testing reimbursement processes are improved, particularly for whole-genome sequencing. To change the status-quo, recently, Shivom, together with other entrepreneurs from all over the EU including the Netherlands, Italy, France, Germany, UK, and Hungary joined forces with experts from the healthcare industry, including insurers and policymakers during a policy perspective meeting of the European Commission in The Hague/Netherlands.

https://ideasfrom.eu/value-track-personalised-medicine/

A hot topic of this policy perspective meeting was the reimbursement of genetic tests because uncertain or inadequate reimbursement by public and private payers of genetic tests creates one of the most significant barriers to the development and adoption of precision medicine. We at Shivom think that genome sequencing, in general, should be subject to reimbursement, including direct to consumer (DTC) genetic testing, which enables consumers or patients to access their genetic information directly from a testing company.

Shivom is pushing policies for reimbursement of genetic testing

Dr. Axel Schumacher, CEO of Shivom: “To have access to your DNA sequence may be necessary for many reasons, including for predicting individual predispositions to diseases or conditions, or for preventive, therapeutic, reproductive, or life planning measures. Lack of a positive reimbursement decision disincentivizes patient participation and creates a barrier to the use of modern genomic medicine by authorizing clinicians and patients. As long as a whole genome sequencing test is scientifically valid (of high quality), it should be reimbursed; even more so because it has to be done only once in a person’s life.”

At Shivom, we strongly believe that now is the time to foster a new era of precision medicine through policy changes that empower patients, researchers and healthcare providers to work together toward development of personalized care.

Nugget’s News Features Shivom

One of the most popular YouTube channels on cryptocurrency and blockchain technology, Australia’s #1 Nugget’s News names Shivom as one of the biggest projects to lookout for in the near future.

Nugget’s News team recently reviewed Shivom’s model of building the world’s largest DNA datahub around the globe, and its aim of empowering users and DNA donors with full control and power over the information they share.

The full video is available for viewing here: https://www.youtube.com/watch?v=WiBvGOOq17E

Nugget’s viewers are introduced to Shivom’s comprehensive offering, including securing DNA and genomic data storage, monetizing and incentivizing DNA data sharing and encrypting DNA information to prevent violations of privacy. Furthermore, the review describes how Shivom will guide the field of precision medicine, carrying out genetic data collection through global studies in developing countries, and transform the future of healthcare globally.

We are extremely grateful to the Nugget’s News team for their positive response to our project, and for featuring us on their channel! This is a great encouragement to the Shivom team to continue reaching for the top in our goal to advance and revolutionize genomics and precision medicine!