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 Table of Contents  
PERSPECTIVE
Year : 2022  |  Volume : 2  |  Issue : 1  |  Page : 49-55

Breast Cancer Hub – meeting the challenges to screening, diagnosis, treatment, and support to cancer patients during the COVID-19 pandemic in North-East India


1 Breast Cancer Hub, 9637 Camden Town Dr, Concord, NC 28027, USA
2 Department of Surgical Oncology, St John's Medical College Hospital, Bengaluru, Karnataka, India

Date of Submission18-May-2022
Date of Decision20-May-2022
Date of Acceptance21-May-2022
Date of Web Publication15-Jun-2022

Correspondence Address:
Dr. Lopamudra Das Roy
9637 Camden Town Dr, North Carolina 28027, Concord
USA
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/aort.aort_16_22

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  Abstract 

We report the challenges faced in the villages' Breast Cancer Hub (BCH) adopted in Cachar, Assam, India, since February 2020 during the coronavirus disease 2019 (COVID-19) outbreak. We also present the overall challenges, during COVID-19, even in the urban sectors, with good financial conditions. We report the challenges faced at the grassroots level and how we addressed the concerns. The villages BCH adopted for door-to-door cancer screening, BCH takes care end to end, starting from generating the income certificate, accompanying the patients to the hospitals, helping with registration, communication with doctors, treatment management, covering all the supplemental expenses, with diligent follow-ups, and counseling, making sure that the re-visits to hospitals are also carried out by the BCH team, or in most cases, the patients are negligent to continue their treatment and miss out on the follow-up dates. COVID-19 pandemic worsened the prevailing difficult situation of cancer diagnosis and treatment in North East India.

Keywords: Cancer, COVID-19, diagnosis, screening, treatment


How to cite this article:
Devi S, Pashi S, Singha R, Ramesh RS, Roy LD. Breast Cancer Hub – meeting the challenges to screening, diagnosis, treatment, and support to cancer patients during the COVID-19 pandemic in North-East India. Ann Oncol Res Ther 2022;2:49-55

How to cite this URL:
Devi S, Pashi S, Singha R, Ramesh RS, Roy LD. Breast Cancer Hub – meeting the challenges to screening, diagnosis, treatment, and support to cancer patients during the COVID-19 pandemic in North-East India. Ann Oncol Res Ther [serial online] 2022 [cited 2022 Nov 29];2:49-55. Available from: http://www.aort.com/text.asp?2022/2/1/49/347555


  Introduction Top


Cancer is a leading cause of death globally. Every year, millions of cancer patients could be saved from premature death and suffering if they had timely access to early detection and treatment.[1] Health-care providers in rural India regularly see women coming in an advanced stage of breast cancer as access to the health-care facilities are compromised due to sociocultural, economic, and environmental factors. In the villages of Northeast (NE) India, the situation is grimmer, with cancer screening as the least priority. Breast Cancer Hub (BCH) has been extensively working in India in the urban and rural sectors across the country since its inception in 2017, with the initiative of Dr. Lopamudra Das Roy, executing community outreaches, screening camps, treatment aid and management, research, in addition to providing counseling and support, working at the grassroots level, providing sustainable solutions. BCH also adopted villages, penetrating deeper, going to each member, each household, maintaining a database and follow-ups, for cancer screening, treatment management and support, and palliative care counseling. BCH monitors and manages patients with cancer who report to the organization individually, case by case. In this study, we report the challenges faced in the villages which the BCH adopted in Cachar, Assam in India since February 2020 during the coronavirus disease 2019 (COVID-19) outbreak.[2] We also present the overall challenges, during COVID-19, even in the urban sectors, with good financial conditions. The COVID-19 situation aggravated the already worsened situation with everyone's health and most importantly related to cancer which if not detected early, may lead to death. We studied many thought-provoking cases in terms of women's health and with COVID-19 the scenario became grimmer. With our suspicious cases that needed additional screening, living in far-flung interior rural areas, commute had become a huge challenge. The restrictions on movement, new norms of public vehicles, etc., had increased the fares more than thrice. Many hospitals' outpatient departments (OPD) were closed or had restricted entry. Since March 2020, new protocols got introduced in hospitals restricting the regular clinical screening or OPD process. BCH was determined and with our efforts, helped many of the suspicious cases receive treatment by providing support from an emotional and financial standpoint.[2],[3],[4],[5],[6],[7],[8]


  Materials and Methods Top


The study was approved by the Ethics Committee Approval vide IRB USA #20204167, IEC India #1/34/2021 (St John's Medical College and Hospital).

BCH adopted villages in Cachar, Assam, India

The study was conducted in person, and the obtained data are subsequently de-identified for analysis. Consent is taken from each participant with clear transparency. The BCH team, Project coordinator Sanalembi Devi, is the direct supervisor of our field workers under the mentorship of Dr. Lopamudra Das Roy. We monitor and manage each suspicious case individually, case by case. We take the suspicious cases to Cachar Cancer Hospital or Silchar Medical College in Assam, India, for further screening, diagnosis, and treatment. The hospitals provide treatment at subsidized rates under the government-aided schemes and we are thankful for their services, but the remaining treatment expenses, BCH covers. The villagers are daily wage earners living a hand-to-mouth existence without any savings. On many occasions, there is no person in the family to accompany the patient to the hospital, eventually delaying or skipping treatment. BCH team takes care end to end, starting from providing transport, purchasing medicines, diagnostic tests, which are not covered under the government schemes. BCH team assists the patients by taking them to the hospital, helping with income certificates, Atal Amrit Abhiyan (AAA) card, hospital registration, patient communication with the doctor, accompanying them in the full diagnosis process, and buying necessary medicines, dropping them home with follow-ups and counseling.

The villages in India that the BCH adopted since February 2020 are: Sundari Part-I, Sundari Part-II, Sundari Part-III, Sundari Part-IV, Boali (Boalihaor), Sentcatherine, Bhorakhai, Bidruhipar, Bhaurikandi-I, Bhaurikandi-II, Dharamkhal.

The population is Manipuri (Meitei), Bhojpuri, Desuali, and Bengali. Occupations are daily wage earners, agriculture, fishing, tea-garden manual workers, economically below the poverty line. The families of these villages are financially/economically extremely challenged.

Urban and rural sectors of NE India

Through our BCH-organized community outreaches, cancer screening camps, and webinars, executed by Dr. Lopamudra Das Roy, we help cases to be detected early, analyzing the reports, navigating suspicious cases toward health-care facilities and affordable options for the underprivileged and uninsured populace. We have follow-ups from patients as Dr. Das Roy shares her contacts during the outreaches she conducts, taking accountability and providing scientific counseling for each patient reaching out.

BCH Support Groups

(A) We provide scientific analysis of the cancer diagnosis and treatment; (b) We publish stories and interviews of cancer advocates in local languages to inspire others fighting cancer; (c) Our Global Virtual Support Groups are emotionally connected as we stand for each other.

COVID– 19 responses

BCH executed COVID-Awareness sessions Globally, and in the BCH adopted villages-distributed masks, sanitizers, generated safety protocols, and provided Food Relief to 674 Families (4289 villagers starving and in utmost need) during both the waves in addition to building a comprehensive list of COVID-19 Treatment Infrastructure Resources for India during the 2nd Wave.


  Results Top


We report the challenges faced at the grassroots level and how we addressed the concerns. During the COVID-19 pandemic situation, the pressure on limited hospitals in North-east India, serving the underprivileged with subsidized treatment, which was already overburdened with patients, was reaching a tipping point. Hospitals treating cancer patients were also required to open isolation wards and COVID-19 testing departments. These were additional prerequisite as precautionary measures required to maintain the COVID-19 aseptic condition. There were times when hospital management had to close on Cancer cases, since new cases of COVID-19 flooded the hospitals, restricting the immunocompromised Cancer patients' access to hospitals or patients themselves avoided the hospitals as COVID-19 protocol safety measures took the upper hand. Due to the unique geographical area of the Northeast, it has always been a challenge to travel from one corner to another. At the time of the COVID-19 pandemic, cancer patients faced multiple challenges, and also the outstation patients suffered a lot who came from distant remote places after overcoming the difficult travel routes.

  1. In the urban sector, in North-east India, irrespective of education, or socioeconomic condition being good, we faced huge resistance in navigating the patients to the hospitals. Any suspicious Cancer case or a preexisting cancer patient, already undergoing treatment, needed to get their COVID test before seeing a doctor. In society, cancer has always been taboo, and on top of that, the taboo of COVID-19 overwhelmed. Just to avoid the COVID-19 testing procedure, patients were not setting off for the diagnostic screening tests, even when the symptoms emerged; therefore, the detection was late, mostly reaching advanced stages of cancer, especially Stage 3 or 4. For the patients undergoing treatment, the crisis of lockdown, lack of transportation, and hospital strict protocols delayed the ongoing treatment, leading to irreversible outcomes, even though the families could afford it financially.
  2. In the rural sector, we were drowned with challenges, but our team was determined to execute and help to the best of our capacities. We faced the strict need for a COVID-19-negative certificate for our cases, but all the villages did not have the centers to execute the tests. Patients were reluctant to visit the COVID-19 test centers for the higher cost of public transport; loss of income during the lockdown. They needed money for transportation and to cover additional remaining expenses during their visit to the hospital, even if the hospitals were providing subsidized treatment. In addition, the ongoing cancer screening processes of government hospitals also got disrupted due to new protocols to prevent COVID-19
  3. Global Webinars hosted to support the cancer patients and families and in-person community outreaches/screening camps:[3],[4],[8] BCH hosted 17 webinars with oncologists, cancer advocates, and specialists, covering the burning topics to help the patient families during the pandemic. Dr. Lopamudra Das Roy executed 350 community outreaches/screening camps/webinars in 2020 and 2021, during the COVID-19 crisis on breast cancer and other cancers – Early detection and prevention in collaboration with other organizations, including educational institutes to motivate youth so that they can spread the word in their own network of family and friends [[Figure 1] is a representation of BCH Community outreaches in diverse age groups and segments]. During the COVID-19 crisis, the awareness program continued, saving innumerable lives each day by helping to be detected early, analyzing the reports, and navigating suspicious cases toward health-care facilities and affordable options for the underprivileged and uninsured populace. BCH has follow-ups from patients as Dr. Das Roy shares her contacts during the outreaches and provides scientific counseling and guidance for each patient reaching out
  4. BCH Support Groups:[7] During Dr. Lopamudra Das Roy's community outreaches across India, she realized, how the concept of Support group was missing from the small towns, as she interviewed many Breast Cancer Fighters and realized their helplessness, emotional isolation, myths within the community, and fear to undergo treatment [[Figure 2] reflects a glimpse of our underlying efforts]. During the Cancer Journey, Support from caregivers, doctors, society, and other survivors is the utmost need. During the COVID-19 pandemic, Dr. Das Roy, initiated the BCH Virtual Support Family, with Oncologists, Scientists, Survivors, and Patient's families, connecting the patients globally, and helping with guidance and counseling, though separated miles apart but connected emotionally as a family, breaking the barriers
  5. BCH patient treatment Aid for the underprivileged:[6] We provide financial aid with cancer treatment (all types of cancer) for the under-privileged, extremely poor uninsured populace, through authenticated background checks. While providing direct financial support to the patient's families, we conduct an intense background check, verifying each document, treatment receipt, and diagnosis report so that we can help the genuine cases with cancers that are in extreme financial challenges, with diligent follow-ups of the aid utilization [[Figure 3] portrays the underprivileged community we serve]. Case Study: We report one of the scenarios where a patient reached out to BCH, to receive medical guidance and treatment aid. The patient traveled from Cachar to Guwahati to get treated at Dr. B. Borooah Cancer Institute in Guwahati, India but could not afford the additional treatment charges. BCH's funding is very low, but we devote 100% of community donations received, toward our mission. Therefore, with each patient, we can afford a maximum of Indian rupees 15,000–20,000 (US Dollars [USD] 195–250), but this amount adds a huge value to cover the additional treatment costs for the patient, supported by the government schemes and becomes a life-saver
  6. We report a few case studies, and a few representations of the challenges we faced, to report the overview status and concerns of COVID-19 and its role in the Circle of Cancer:

    Case study: Patient A: BCH adopted villages:[5] On June 12, 2020, the BCH team at the Bhorakhai area found Patient A with a lump on her right breast. Even after repeated counseling, she was not willing to go for breast cancer screening in fear of undertaking a mandatory COVID-19 test despite free screening available in the hospital. There was tremendous fear among people that while going for the COVID test, one can be infected with COVID. Our team followed up to check, convince and then finally our BCH field worker accompanied patient A for COVID test on August 25, though the immediate test result was negative, despite our request we did not receive the written report, which was supposed to be given after 3 days, again delaying the Breast cancer screening process and adding to our concerns as we had to come back again for the COVID-19 result report and if the timeframe exceeds, then our patient may not be eligible for screening and would be asked to re-do the COVID-19 test. Then, there were lockdowns declared and we had to reserve a private vehicle at a prohibitive cost. These were circumstances that our villagers would never have overcome on their own without our intervention. BCH supported the travel expense and all other disbursements. We took care of patients end to end and counseled at each step with diligent follow-ups.


  7. [Figure 4] symbolizes our tireless endeavors in the BCH adopted villages in Cachar, Assam

  8. Case study: Patient B, BCH adopted villages:[5] She had a lump on her right breast. Due to lockdown, Patient B's husband working elsewhere could not send her money. Therefore, it became difficult for her to arrange the money for transportation from Bantarapur to Hospital, and the transport charges also peaked. Moreover, her husband who stayed in Manipur was not allowing her to go alone for the breast screening due to social stigma. Finally, after constant counseling, and after the assurance that our team will accompany her, Patient B was allowed to go to the hospital. With the support of the BCH team, she was brought to hospital for screening, and BCH took care of diagnosis, treatment management, food, and all other variables.
  9. Case study: Patient C, (BCH adopted villages), resident of Bantarapur (earning ~ Rs 4000/month). On June 16, 2020, suddenly Patient C felt a lump with pain in her right breast accompanied by fever. On June 19, she contacted our team. Knowing her poor financial condition and lack of knowledge about breast cancer, and to get 100% peace of mind, the BCH team went to her home on June 21 in prime COVID-19 time to help and guide her. Patient C was taken to the hospital accompanied by a team member. Her diagnosis was not cancer, but she was a high-risk case with an infectious lump that needed a series of antibiotics and other medications. Patient C is now fully recovered but if the condition persisted, this could be a potential risk factor to develop into cancer in the future. Her transportation cost and all expenses were covered by the BCH and our team has followed up on the case with regular visits. This was a common phenomenon, where patients even knowing their sufferings, abandon to go to hospitals and cover additional expenses, which do not fall under the government aid schemes for the underprivileged sectors. Therefore, the BCH team assists the patients from taking them to the hospital, helping with income certificate, AAA card, and hospital registration, to patient communication with the nurses or doctors, and covers all expenses starting from transport, purchasing medicines, diagnostic tests, surgical procedures not covered under the government schemes, accompanying patients in the full diagnosis process, with follow-ups and counseling [5].
  10. Case study: Patient D: A scenario we face many times, patients reaching out from different parts of North-east India and we try to support them to the best of our capacity with counseling, but we wanted to highlight the unavoidable circumstances faced by the patient communities. Patient D from Haflong, felt a lump in her right breast for 6 months. She immediately consulted a doctor in Haflong. She went through surgery but was suggested to visit Cachar Cancer Hospital. It is 3–4 h road journey from Haflong to Silchar. However, due to the lockdown, all the train services were kept suspended, and the road condition was awfully bad during the monsoon. They went to Dr. B. Borooah Cancer Institute in Guwahati, India. However, due to the long wait during the COVID-19 crisis, patient further moved to a private hospital in Guwahati. Though Patient D had AAA (Health Card), she could not avail of the services as the private hospital did not fall under the designated hospital network. They had to pay a bill of around Indian rupees 75,000 (USD 970). The family is now with a financial burden engulfed with debt.
  11. Case study: Patient E,[6] Jorhat, Assam: Metastatic Breast Cancer (Last stage): On June 17, 2020, Patient E was brought to Guwahati with a private vehicle which cost Rs. 7000. For a poor family, it was an extremely high amount. As they needed to wait for a CT scan report of the thorax and abdomen for a week, she was again brought back to Jorhat in India on June 24 by a private vehicle. However, her condition deteriorated so she was again rushed to Guwahati on June 30. Since her condition was very serious, she was asked to do a Bone scan (three-phase) whole body and FISH test. Due to lockdown, there was a long queue of patients with limited scanning, due to which she got an appointment on July 7. Therefore, the family decided to do the bone scan at a private diagnosis center in Guwahati at a higher cost of Indian rupees 12,500 (USD 160) which cost Indian rupees 3000 (USD 38) at Dr. B. Borooah Cancer Institute in Guwahati, India, leading to a huge overall financial burden for the patient family. BCH tried to support the family to the best of our capacity, but there are disparities that we need to bridge further
  12. Case study: Patient F: A Stage 4 metastatic breast cancer patient from a remote area in Siliguri, under the treatment protocol of Tata Memorial Cancer Hospital, Mumbai was receiving combinational chemotherapy every 21 days from a local cancer center. Unfortunately, the lockdown led to taking a break in the treatment. Therefore, the health condition worsened with ascites fluid accumulation. With a lot of challenges, Dr. Das Roy connected the family to oncologists at Tata Medical Centre in Kolkata. With immense transportation hassles, the patient was taken to Kolkata but succumbed to her life in May 2020
  13. In the BCH adopted villages,[5] we faced similar situations with Cervical cancer suspicious cases, bringing the cases for further PAP Smear and HPV testing was a huge challenge, especially since it concerned the reproductive organs, facing resistance from families and patients themselves to be checked. During the COVID pandemic, when we started to intervene with our villages' adoption programs, we met women who were having abnormal discharges for months, and the untapped sectors surfaced, who never went for screening despite having issues for months and years. With our relentless efforts, we were successful in getting the patients treated even during the pandemic, as BCH became the bridge to connect with the healthcare system, taking accountability for the cases
  14. COVID-19 Response in the BCH adopted villages: [9] During the COVID-19 lockdown, the BCH team also kept on monitoring the situation of the people of this area on humanitarian grounds. BCH found the families were eating rice with saltwater and chili due to poverty because of no work as they belonged to daily wage-earning occupations – at tea gardens, construction work, brick factories, agriculture, etc., they were almost running out of food stock
Figure 1: Dr. Lopamudra Das Roy conducts Scientific Awareness Campaigns in Educational institutes to motivate youth, and executes Outreaches into Communities, persuading them to Cancer screening and providing medical guidance, and counseling to each suspicious case.

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Figure 2: Late Dr. Chandra Sekhar Das, and Dr. Lopamudra Das Roy, identified the need for local support groups during their outreaches before the COVID 19 outbreak and Dr. Das Roy built programs to support patient families during Covid-19 & beyond

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Figure 3: BCH identifies the cases in extreme financial constraints and provides treatment Aid for the under-privileged, extremely poor uninsured populace, through authenticated background checks, with diligent follow-ups of the Aid utilization. BCH: Breast Cancer Hub

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Figure 4: BCH team working in the villages Adoption Project in Cachar, Assam: Sanalembi Devi, Sapna Pashi, Ranjita Singha, and Dr. Lopamudra Das Roy. BCH: Breast Cancer Hub

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  • Food relief to 674 Families (4289 villagers, starving, in need), 2021 (2nd Wave): 452 families, 2165 villagers, and 2020 (1st wave) – 222 families and 2124 villagers (extremely poor families starving due to lockdown constraints, in the villages, BCH adopted for cancer screening and treatment). Strategy: BCH respected the dignity of each person who lost their daily wage-earning to Lockdown, so maintained the database and reached out to the utmost need with follow-ups and going to their doorstep to provide food and rounds of replenishments.
  • BCH helped implement and execute Health and Safety Measures via COVID-19 awareness, mask, and sanitizer distribution, enforcing guidelines in collaboration with the local organizations and authorities helping to prevent COVID 19 spread in marketplaces among local vendors and in public gatherings.



  Discussion Top


BCH has become the bridge to connect with the health-care system in the urban and rural sectors and also in the untapped areas in the villages BCH adopted during the outbreak of COVID-19, in February 2020. Due to the endless community outreaches, screening camps, and webinars, executed by BCH, we have innumerable patients detected early from Northeast India and India in general, reaching out to us for help but in fear of COVID-19, they were hesitant to visit the cancer centers for further screening. We have instances where due to lockdown, cancer patients residing in remote areas were delaying their surgery, chemotherapy, and radiation, and there were cases of cancer patients with COVID-19 when their treatment got compromised. We also have reports of cancer survivors delaying their 6-month follow-up scheduled check-ups due to hospital strict protocols with COVID or the lockdown transportation concerns or families losing jobs, leading to the financial burden. In these circumstances, follow-up check-ups took back seats.

Despite all the challenges, BCH was determined and with relentless efforts, helped patients to be detected early through awareness and screening camps, navigating and guiding the suspicious cases toward affordable health-care facilities, providing educational resources, support, counseling, and treatment aid for the underprivileged. For the patients who were at the end-stage, BCH held their hands through the phase of their journey with constant support for the caregivers and continues beyond. The villages BCH adopted for door-to-door cancer screening, BCH takes care end to end, starting from generating the income certificate, accompanying the patients to the hospitals, helping with registration, communication with doctors, treatment management, covering all the supplemental expenses, with diligent follow-ups, and counseling, making sure that the re-visits to hospitals are also carried out by the BCH team, otherwise the patients miss out the dates or are reluctant to continue their treatment.[10],[11]


  Conclusion Top


COVID-19 pandemic worsened the prevailing difficult situation of cancer diagnosis and treatment in North East India. However, BCH was determined with our efforts and helped patients to the best of their capabilities, saving their lives and becoming a support system for their families.

Acknowledgments

BCH is extremely thankful to Cachar Cancer Hospital and Silchar Medical College for their support with BCH detected suspicious cases from the BCH adopted villages in Cachar, Assam. BCH is thankful to all our health-care professionals, volunteers, and collaborators, who believe in our uncompromising efforts toward our mission.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

1.
Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, et al. Global cancer statistics 2020: GLOBOCAN estimates incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin 2021;71:209-49.  Back to cited text no. 1
    
2.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/. [Last accessed on 2022 May 17].  Back to cited text no. 2
    
3.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/india-1. [Last accessed on 2022 May 17].  Back to cited text no. 3
    
4.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/events. [Last accessed on 2022 May 17].  Back to cited text no. 4
    
5.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/adopt-a-village. [Last accessed on 2022 May 17].  Back to cited text no. 5
    
6.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/patient-treatment-bucket. [Last acessed on 2022 May 17].  Back to cited text no. 6
    
7.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/our-heroes. [Last accessed on 2022 May 17].  Back to cited text no. 7
    
8.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/videos. [Last accessed on 2022 May 17].  Back to cited text no. 8
    
9.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/covid19-projects. [Last accessed on2022 May 17].  Back to cited text no. 9
    
10.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/bch-reviews. [Last accessed on 2022 May 17].  Back to cited text no. 10
    
11.
Breast Cancer Hub. Available from: https://www.breastcancerhub.org/video-testimonials. [Last accessed on 2022 May 17].  Back to cited text no. 11
    


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