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Inside the Patient Entrepreneur’s Mind: Sangeeta Agarawal RN, MS

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Sangeeta Agarawal RN, MS is the Founder & CEO of Helpsy Health. 

As a patient entrepreneur, can you describe your personal connection to cancer and how this experience drove you to innovate the space?

My specific cancer connection includes multiple close family members and my best friend while I was going through undergrad. A lot of the women in my family had cancer and due to the stigma, it was never shared. A lot of the women in my family were also beaten and did not receive proper support. They also didn’t know that survivorship comes with side effects and lingering issues so that suffering was never addressed. Similarly, my best friend also had lingering side effects and felt that she could never really fully live her life. Working as a cancer nurse, I saw really bad things happen in terms of families breaking up, couples cheating, just because they didn’t have the right support to understand the cancer journey.

My background is in engineering. I’ve been a computer scientist and engineer working in this field for many years at some of the top organizations like IBM and Motorola. After that, I started having a lot of personal health issues, in part from being a victim of a violent crime. I almost lost my life, becoming an acute patient overnight, followed by multiple chronic health problems. I became an e-patient to apply the same rigor of scientific research and analysis to my own plan and I strengthened my passion for connecting people and sharing the truth.

I started cloning my brain as a cancer nurse to make the support available to everyone, online.

For over a decade, I’ve now worked in healthcare. I am trained as an Ayurvedic doctor at a Masters level focusing on behaviour change, diet change and whole health living. I ran my own clinic for 8-10 years and alongside I pursued western medicine and became an oncology nurse. With Helpsy, I combined eastern, western, and tech to try and address underlying root causes of physical/emotional health in order to provide solutions at scale.

What makes Helpsy unique and how does it meet an unmet need of the cancer community?

We are doing lot of work when it comes to helping people with finding cancer cures, but the unmet need today of our cancer community involves outpatient and follow-up care. As more and more care is moving outpatient, we need to support people through these different health issues and help share the responsibility put on the patient and family. Those aspects of care are not sufficiently addressed when 90% of their care happens when they are at home. There are a lot of gaps in that aspect of care because they may not remember what to do or have emotional issues that are not supported. They may need to know how to take time from work, rehab, transportation, peer-to-peer connection, etc. and we need to support those needs because it affects their lives in a very detrimental way. 90% of cancer patients have short and long-term side effects, but most of them are not aware that they will have these issues. Additionally, almost 40% of cancer patients will go bankrupt in two years. We are able to provide these services at scale, at low cost to everyone. Not everyone has a special, full care team and we’ve made that possible by cloning the brain and knowledge from all the key experts in the industry from an oncologist to a nurse to a dietician and yoga teacher.

Helpsy is an artificial intelligence system that has the brain of so many different modalities and provides the knowledge and expertise to the person for the issue they are having. It is customized to honor culture, language, socioeconomic status and is truly a personalized solution. Additionally, it is a true combination of technology and human expertise. There is a place where technology can do things and add value to humans as well as where clinical experts need to provide knowledge and clinical support. Helpsy can help balance that tradeoff, which is very important in today’s world.

Are there any other unmet needs of the cancer community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

The one big unmet need is to support the caregiver, family, loved ones and clinical care team. If you look from a caregiver’s perspective, given that almost all of us have different health issues, almost everyone is a caregiver multiple times in their lives. If you become a cancer caregiver, there are a multitude of issues you face compounded with your own personal issues. The caregiver gets spread really thin because they need to become the breadwinner, do the logistical work, and take care of their own needs. There are not enough resources and support to provide for them. At Helpsy, we are trying to do more and more for them. Patient advocates are best suited as entrepreneurs because of the shared lived experience. We have been through that challenge or that problem. We know what the journey is like and we know the dark days versus the good days. We can build solutions that help people like us at a much closer level than what is theoretically the ‘best’ solution for somebody. It is important that a lot of patient entrepreneurs are also advocates, in order to tie together the collective wisdom and suffering of larger groups, instead of addressing those challenges with just their individual experience.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry? Is there a particular healthcare innovation that inspires you?

A few role models from growing up still inspire me. Before I knew I would be a nurse, I was always drawn to Mother Theresa because she worked in India helping people. I come from a humble background growing up on the streets in India. I was always the black sheep in my family trying to do something big and bold that didn’t fit into the norms. I looked to Mother Theresa because she had the ability to initiate large-scale change but also help others and support people. Reading about her, I was also inspired by Florence Nightingale, who was in an even more difficult situation hundreds of years ago. Now, looking back, I guess I was meant to be a nurse. On the technology side, I’m inspired by Adele Lovelace because she gave birth to the field of computer algorithms, pioneering some of the early algorithms sold. Working in tech, there are not a lot of women so sometimes we feel out of place and are mistaken for HR instead of an engineer. Lastly, my life is a collection of gifts and resources that people have given me, because I didn’t grow up with them. They have inspired me to help other people because that little help could mean everything to that person.

Lastly, what do you do for fun to manage the stress of running a business as both a person connected to cancer and an entrepreneur? Do you have any similar advice on work-life disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

Absolutely. I think I learned from experience because, when I first started Helpsy, it was pure passion of wanting to change the world. In the process, I would burn myself out as well as everyone around me. I made some mistakes and learned being an entrepreneur is a marathon and not a sprint. You have to keep pushing through it. There is a lot to do each day but it is important to pace yourself and the people around you so you can continue to deliver. I learned to celebrate small wins and to recognize the community effort.

I’m a servant of the company and there is an entire community of people working in this together.

Keeping that in mind and bringing everybody into the fold is important. It is also important to pick where to focus your energy and being able to make that calculated risk about big decisions. At the end of the day, I close every night with a gratitude practice for everything that happens and wake up grateful for the day ahead of me. Lastly, meditation helps, exercise helps, and everyday taking the time to learn from my mistakes and how I handle stress.

Call to Action for Innovators and Patient Entrepreneurs

A call for action to patient entrepreneurs in the area of cancer to compete at the Lyfebulb-Helsinn Summit for the first ever Lyfebulb- Helsinn Innovation Award

  • The Award recognizes Patient Entrepreneurs’ Innovative Efforts and Ideas for cancer and cancer supportive care using drugs, medical devices, consumer products, or healthcare information technologies
  • Newly appointed jury panel members unveiled
  • Deadline for submissions: January 22, 2018

 

MONACO, PRINCIPALITY OF MONACO and NEW YORK, NY, JANUARY, 9, 2018:

Lyfebulb and Helsinn Investment Fund S.A., a fund focused on early-stage investments in areas of high unmet patient need, invite patient entrepreneurs that have embraced and endured the real life experiences of cancer to compete for the Lyfebulb-Helsinn Innovation Award.

It has been announced today that:

  • Carolyn R. “Bo” Aldige, President and Founder of the Prevent Cancer Foundation
  • Stephen Squinto, PhD, Lyfebulb Chairman and Co-Founder, Venture Partner at Orbimed, and Co-Founder of Alexion
  • Professor Patrick Rampal, MD, President of the Scientific Center of Monaco
  • Professor Franco Cavalli, MD, Director of Oncology, Oncology Institute of Southern Switzerland
  • Professor Françoise Meunier, MD, EORTC Director Special Projects

 

are the newly-appointed jury panel members of the first Lyfebulb- Helsinn Innovation Award.

The Award will recognize outstanding entrepreneurial potential to commercialize innovative efforts and ideas to better manage and improve the quality of life of cancer patients with respect, integrity, and quality, using drugs, medical devices, consumer products and healthcare information technologies. Established companies of all sizes founded by cancer patients, cancer survivors, or those having a close relative with cancer, who have created a product to address issues encountered by cancer patients, are invited to submit applications by January 22, 2018,  through the Lyfebulb-Helsinn Innovation Summit & Award website, where more information regarding eligibility and key criteria can also be found.

Ten finalists will be selected by Karin Hehenberger, MD PhD, CEO and Founder of Lyfebulb, and Mr. Riccardo Braglia, Helsinn Group Vice Chairman and CEO, and invited to compete at the Innovation Summit which will be hosted on 26-27 March 2018, by Helsinn Investment Fund at the Monte-Carlo Bay Hotel and Resort, in Monaco, Principality of Monaco. The Summit is founded upon Lyfebulb’s concept of Patient Entrepreneurship and Helsinn’s determination to provide the best supportive care for cancer patients and to improve the health and quality of life of every person affected by cancer. At the summit, the top finalists will be chosen by a panel of experts through a special “pitch session.” In recognition of the best innovative efforts and ideas, a symbolic monetary prize of USD 25’000 will be given to the entrepreneur winner to advance his/her business and use his/her life expertise to help manage the burden of cancer.

“At Lyfebulb, we come into contact with many people who are putting their own experiences with cancer towards developing solutions to help others. Now, for the first time, patient entrepreneurs have the opportunity to receive exposure and financing toward their companies through a targeted event to help them advance their cause,” says Dr. Karin Hehenberger.

Riccardo Braglia added, “Lyfebulb is about encouraging the best in patient entrepreneurship, drawing on the talents of people with first-hand experience of the cancer journey to help develop innovative approaches to cancer supportive care, and this is very much aligned with Helsinn’s journey. We are delighted of the jury panel – their expertise, experience, industry knowledge and dynamism in helping people with cancer will be invaluable.”

 

About Helsinn Investment Fund

The Helsinn Investment Fund is focused on early-stage investments in areas of high unmet patient need. Backed by the Helsinn Group, and guided by Helsinn’s core values of quality, integrity and respect, Helsinn Investment Fund aims to help companies with innovative technologies to transform new ideas into commercial solutions with the potential to impact health-related quality of life of patients.

Drawing on Helsinn’s over 40 years of investment into research and development and commercial expertise, the investment fund selects companies with technologies in a range of areas including cancer therapeutics and diagnostics, cancer supportive care, metabolic and gastrointestinal disorders, and dermatology conditions.

For more information, visit www.helsinninvestmentfund.com

 

About the Helsinn Group

Helsinn is a privately owned pharmaceutical group with an extensive portfolio of marketed cancer care products and a robust drug development pipeline. Since 1976, Helsinn has been improving the everyday lives of patients, guided by core family values of respect, integrity and quality. The Group works across pharmaceuticals, biotechnology, medical devices and nutritional supplements and has expertise in research, development, manufacture and the commercialization of therapeutic and supportive care products for cancer, pain and inflammation and gastroenterology. In 2016, Helsinn created the Helsinn Investment Fund to support early-stage investment opportunities in areas of unmet patient need. Since 2012, Helsinn has been coordinating clinical and regulatory activities in China from Beijing and in 2017 established an office in Shanghai to pursue commercial activities. The company is headquartered in Lugano, Switzerland, with operating subsidiaries in Switzerland, Ireland, and the U.S., as well as a product presence in approximately 190 countries globally.

Lyfestories: “Cancer with a Smile”– Finding Life After Cancer

For many people including myself finishing treatment for cancer can leave you feeling a little lost. You expect to feel over the moon but often end up down in the dumps which can come as a shock. A recent survey by Breast Cancer Care discovered that more than half of breast cancer patients questioned struggled with anxiety after treatment ended and 26% said life after cancer was harder than chemotherapy or radiotherapy.

At this weeks final Moving Forward course with Breast Cancer Care we had a group session with a councillor and all eleven of us said we found life after cancer much harder than we had expected. Initially when treatment stops, being out of the cycle of hospital appointments is unsettling. I found I had got used to the constant care and attention of the nurses and doctors. It was comforting to know they were on hand if you had any problems.

Then treatment stops and its time to get back to your ‘normal’ life, but it just doesn’t seem to fit anymore.

Talking to the other ladies at the course it became clear we all felt a similar feeling of loss but for different reasons. One lady even described it as being like grieving, grieving your old life and body. I could completely relate to this as, for me, hormone therapy and the side effects are something that, ten months in, I am still learning to live with. I feel angry and cheated that, at 35 years old, I am dealing with severe menopausal symptoms while my friends are all having babies. The physical changes that breast cancer brings is another big hurdle many women face. The war may have been won but there are still a lot of casualties to be treated, operations that haven’t gone to plan, unpredictable fatigue and painful scar tissue.

The overall consensus from the group was that the mental scars run far deeper than the ones on our bodies. Many of us feel frustrated that, months after treatment is finished, cancer is still bringing us down but we find it hard to admit this to friends and family. The fear of recurrence is also very raw and many of use don’t trust our bodies anymore, fearing that every little ache or pain is the cancer returning.

Fortunately there are lots of resources out there. Macmillan and Breast Cancer Care both offer courses and counseling that can help cancer fighters deal with life after cancer. I had six sessions of counseling through Cancer Support Scotland which I found really helped get my head in a much better place. We finished the course in a lovely way by writing a letter to ourselves that we will receive in a few months time as a reminder of how far we have come. Our group was keen to stay in touch with each other and the course leader very kindly collected all our phone numbers and email addresses so we can arrange to get together again.

The ‘Someone Like Me’ service that Breast Cancer Care offers is another fantastic way to find someone who has been through a similar experience. It’s also very important to remember our cancer nurses are there for us during and after treatment, so if you have any niggling questions or side effects they are only a phone call away. If you don’t feel happy calling your hospital the Breast Cancer Care Helpline is manned by specialist nurses.

Life after cancer is hard but we are most definitely not expected to handle it alone.

To check out more of Audrey’s amazing work, go here: https://cancerwithasmile.com/

Instagram: @cancerwithasmile

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