Global Pain Solace: everyone on the planet deserves pain relief
Wednesday 10 September 2014
The African Cancer Patients Dying in Unnecessary Pain - The Guardian
In Senegal [like many developing nations], more people die of cancer than malaria, tuberculosis and Aids put together, but many do not get the drugs they need:
"The doctors in Senegal's second city of Touba have long since given up trying to prescribe the drug that stops the pain of cancer. There aren't any morphine tablets in the city. The only place it can sometimes be found is in the capital, Dakar, four hours away – but government regulations prevent them from writing prescriptions for it anyway. They don't have the right kind of prescription pad. Like many cancer patients Syllah was being sent home the next day."
Link to full article:
The African cancer patients dying in unnecessary pain | Krishnan Guru-Murthy | World news | The Guardian
"The doctors in Senegal's second city of Touba have long since given up trying to prescribe the drug that stops the pain of cancer. There aren't any morphine tablets in the city. The only place it can sometimes be found is in the capital, Dakar, four hours away – but government regulations prevent them from writing prescriptions for it anyway. They don't have the right kind of prescription pad. Like many cancer patients Syllah was being sent home the next day."
Link to full article:
The African cancer patients dying in unnecessary pain | Krishnan Guru-Murthy | World news | The Guardian
Saturday 6 September 2014
Potential Input Prompts for Opioid-GPS
Some of the potential input promptings we are considering (yet to be finalized):
- if app, a sliding pain scale of 0-10; if SMS, simple input (could expand to ask in the last 24 hrs, average pain out of 10, least out of 10 and worst out of 10)
- patient's diagnosis
- geographic location
- pain medication (morphine) indicated - yes or no
- morphine readily available - yes or no
- estimated time to get morphine (hours) - 0 = available now; 88 (sideways would be infinity, haha) could equate to not available in foreseeable future
- if morphine prescribed & taken by patient, was it effective: yes or no (could give info if appropriate amount available, maybe there were side effects which would mean an alternative required, etc)
Using Open-source Mapping to Help Stop Ebola
The following may be an inspiration on how our project moves forward; see link below for podcast and interactive map noted:
Using open-source mapping to help stop Ebola - SciDev.Net:
"In this podcast, two experts discuss how satellite technology and open-source mapping can help with such humanitarian work, highlighting successes and challenges.
One encouraging example is a programme coordinated by the Humanitarian OpenStreetMap Team (HOT). It has provided aid workers with an interactive map to help them keep track of the disease’s spread and of news related to the outbreaks. The collaborative map displays publicly available data and other resources that can be read or downloaded."
Using open-source mapping to help stop Ebola - SciDev.Net:
"In this podcast, two experts discuss how satellite technology and open-source mapping can help with such humanitarian work, highlighting successes and challenges.
One encouraging example is a programme coordinated by the Humanitarian OpenStreetMap Team (HOT). It has provided aid workers with an interactive map to help them keep track of the disease’s spread and of news related to the outbreaks. The collaborative map displays publicly available data and other resources that can be read or downloaded."
Feedback On "Operation Opioid-GPS" from Stanford mHealth Colleagues
Excerpts from peer reviews with our commentary to follow later:
What worked?
- Your website is amazing. Your idea appears well thought out and seems to solve a significant problem. Interface seems easy for health care workers to use.
- Good job, ideas have been well developed and the methodology adopted is clear
- Great idea and video
- Great presentation and prototype
What could be improved?
- No evidence of customer interviews. It looks like you have done a solid literature review, but it is unclear if you have talked with potential customers or shown them your prototype to get feedback.
- The prototype could me made more explicit and show how informations are being gathered and which alerts/warning are associated with them.
- The app functionalities
- Perhaps have a pain level input that allows users to slide from low - mild - sharp -extreme to add some info to the level of pain experienced.
What was unclear?
- The app seems to create awareness of where there are gaps in the supply chain. What is your plan to make sure someone is looking at the data and filling those gaps so that people are getting the medications they need and not suffering from needless pain? What is your revenue model?
- The Business mode is unclear
- It seems that the team identified a real problem and is moving in a right direction to address it
- It was clear
What other ideas should be considered?
- If you get this working, there is also a huge gap in the insulin supply chain for diabetes, especially in developing countries and rural areas. Once your infrastructure is in place, with minimal modification, your technology may be able to be used to serve that very large market as well. If you get to that point, feel free to contact me and I will share the research I have already done.
- It would sometimes be difficult to prompt the location from the patient. Rather, the apps could detect it automatically.
- What algorithm should be used to decide where (which patient) to go according to location, pain level, distance to the intervention team and other associated costs or parameters?
- Your main focus maybe should focus on a kind of campaign so that those who can change those regulations change something...
- Add pain relief techniques or exercises.
__________________
Note: photo source
Tuesday 2 September 2014
Global Opioid Policy Initiative (GOPI): the WHO perspective
(Published on 28 Nov 2013)
A.Ullrich highlights that the ESMO-led GOPI (Global Opioid Policy Initiative) survey brings the right data at the right moment for the WHO action plan on non-communicable diseases, to catalyse the passage from pilot project to national policy in each country.
Monday 1 September 2014
Opioid-GPS Mock Version 1.0
The following are some mock ups for Opioid-GPS V1.0. This is NOT necessarily the way the app/SMS system will look. Moving forward it will require a more rigourous approach to optimize the interface for various phones and operating systems (iPhone, Android, Windows, etc.) As well, note this is in iOS 7 (Apple's OS for the iPhone). Depending on our customers' needs we may or may not use iOS for the first functional prototypes.
Stay tuned as Opioid-GPS continues to be modified, updated and optimized.
***
Note: Photo from screenshot #3 link
Sunday 31 August 2014
Treat the Pain's Approach
American Cancer Society's TreatThePain.org has an outstanding approach towards resolution of the issue.
Here is an excerpt of their process (click the above link for more):
"More than 3.2 billion people worldwide lack access to adequate pain relief even though morphine, the most effective treatment for severe pain, is safe, effective, plentiful, inexpensive, and easy-to-use.
Here is an excerpt of their process (click the above link for more):
"More than 3.2 billion people worldwide lack access to adequate pain relief even though morphine, the most effective treatment for severe pain, is safe, effective, plentiful, inexpensive, and easy-to-use.
Legal and regulatory restrictions, cultural misperceptions about pain, inadequate training of healthcare providers, a poorly functioning market, generally weak health systems, and concern about diversion, addiction, and abuse create a web of barriers that force millions of people to live and die with treatable pain.
Access to pain treatment is particularly limited in low and middle-income countries where approximately 70% of cancer deaths and 99% of HIV deaths in the world occur, but just 7% of the opioid analgesics are consumed.
The problem can be addressed through several approaches, including a human rights focus, a policy focus, and a training focus.
Our preferred approach: mechanism of access:
We prefer to address the problem using a mechanism of access approach. Together with our partners, we've identified an 8-step framework to group challenges and interventions, called the Morphine Framework. It's a little hard to read here, so you can download a more detailed description of the framework here, or look at our recent article in Lancet Oncology, which describes the framework. (12)
Cancer Pain: The Numbers
Cancer is undoubtedly a burden on a global scale. The number of cases expected to increase to 24 million by 2035 (was 12 million in 2012).
In developed countries, the incidence of cancer pain is in up to 85% of patients. Even in developed countries cancer pain is insufficiently treated in up to 50% of patients. Imagine this same issue in developing countries where analgesic medication shortages are common place.
“...the need for palliative care is considerable. Of the 45 million deaths that occur in developing countries, approximately 60 percent, or 27 million per year require palliative care for diseases such as AIDS and cancer.
Patients plagued by painful symptoms of these diseases benefit from palliative care when other treatment options have been exhausted.
For instance, morphine, which is essential to this care, is inaccessible in more than 150 countries.” (Freedom from Pain documentary)
"The ESMO-led Global Opioid Policy Initiative is the first and largest study of its kind, conducted in 79 countries and 25 Indian States, representing more than 5 billion people, i.e. more than half of the world’s population.
In the regions covered by this survey there are about 8 million new cases of cancer each year and upwards of 5 million cancer deaths.
Of those who die from cancer approximately 70-90% will suffer from severe pain." (GOPI)"Current estimates suggest that upward of 80% of the world’s population lacks access to basic pain relief [6]. Paradoxically, those 80% are mostly in poorer countries, and their need for pain relief is heightened by a relative absence of curative care such as surgery, or treatment for both communicable and non-communicable diseases causing pain (e.g., HIV/AIDS, cancer)."
"We determined per capita need of strong opioids for pain related to three important pain causes for 188 countries. These needs were extrapolated to the needs for all the various types of pain by using an adequacy level derived from the top 20 countries in the Human Development Index. By comparing with the actual consumption levels for relevant strong opioid analgesics, we were able to estimate the level of adequacy of opioid consumption for each country. Good access to pain management is rather the exception than the rule: 5.5 billion people (83% of the world’s population) live in countries with low to nonexistent access, 250 million (4%) have moderate access, and only 460 million people (7%) have adequate access. Insufficient data are available for 430 million (7%). The consumption of opioid analgesics is inadequate to provide sufficient pain relief around the world. Only the populations of some industrialized countries have good access." (DrugWarFacts.org)
“Unlike so many global health problems, pain treatment is not about money or a lack of drugs, since morphine costs pennies per dose and is easily made. The treatment of pain is complicated by many factors, including drug laws, bureaucratic rigidity and commercial disincentives.” (Freedom from Pain documentary)
Cancer Pain Swept to the Wayside in Developing Countries
“...because of the bureaucracy a number of doctors do not want be bothered with prescribing morphine.”
If you are from a developed country, consider the above quote if you or a loved one was faced with moderate to severe pain as a result of cancer or some other debilitating diagnosis.
This issue was highlighted by an outstanding piece of journalism: "How can journalists help raise the profile of cancer and get it on the political agenda in countries where infectious diseases get most attention, reliable data are scarce, doctors are reluctant to talk and editors prefer cheery topics? Two award-winning reporters speak of the challenges they face."
Here are some excerpts that help the issue truly hit home:
“My article sought to capture that burden over the six months that I interviewed and followed patients in my home city of Bulawayo,” Bafana explained to Cancer World. “I have offered just the peak of a wider, complex problem and suffering that cancer patients and their families face in dealing with the disease.”
If you are from a developed country, consider the above quote if you or a loved one was faced with moderate to severe pain as a result of cancer or some other debilitating diagnosis.
This issue was highlighted by an outstanding piece of journalism: "How can journalists help raise the profile of cancer and get it on the political agenda in countries where infectious diseases get most attention, reliable data are scarce, doctors are reluctant to talk and editors prefer cheery topics? Two award-winning reporters speak of the challenges they face."
Here are some excerpts that help the issue truly hit home:
“In a piece titled “Morphine kills pain but its price kills patients”, Bafana examined how in Zimbabwe, a country where diagnostic and treatment facilities for cancer are scarce, patients are dying in extreme pain before even receiving an oncology appointment. An effective supply of morphine would at least ease the suffering, but supply is short and the cost prohibitive.
Bafana talked to cancer patients about their experiences. Two daughters worked for two weeks selling enough of their chickens to raise the 18 dollars needed for a two-week supply of morphine for their mother, bedridden with stage 4 cancer of the cervix.
He wrote: “Pain is scrawled all over Ncube’s face as she narrates her tale: for six months now she has been on the waiting list to undergo radiotherapy at Mpilo Hospital. The radiotherapy machine has been broken for longer than she has been waiting and a new one is only now being installed. ‘The pain is unimaginable,’
Ncube told IPS in her home. Pointing to a white plastic bottle filled with paracetamol, a mild painkiller, she added, ‘That is all I could get from the hospital.’”
Bafana interviewed officials at the Bulawayo Island Hospice Service, which distributes limited supplies of donated morphine to its 300 patients, but is at risk of closure due to high operating costs and low donor support. He found out that in 2012 Zimbabwe used a total of 3.6 kilogrammes of morphine, despite having an allocation of 11.25 kilogrammes.
And he discovered that the cost of morphine could be brought down significantly if hospitals and pharmacies were allowed to stock morphine powder for making a liquid morphine preparation – which is cheaper and more convenient for severely ill patients to take.
“My article sought to capture that burden over the six months that I interviewed and followed patients in my home city of Bulawayo,” Bafana explained to Cancer World. “I have offered just the peak of a wider, complex problem and suffering that cancer patients and their families face in dealing with the disease.”
Is Unmanaged Pain Relief Really a Global Health Issue?
Without a doubt.
The mHealth solution from Opioid GPS would be focused in sourcing, delivering and then the proper use thereof of analgesics by patients and healthcare professionals.
“According to the Union for International Cancer Control (UICC), more than 3.3 million people with cancer are dying in pain, sometimes in agony, each year. Altogether, tens of millions of people are needlessly suffering pain, and a WHO estimate says that 600 million are going to suffer from untreated pain in their lifetime. The reason is simple: lack of access to basic, cheap and highly effective drugs, notably morphine. Around 70% of cancer deaths occur in low and middle-income countries, where just 6% of the opioid analgesics are consumed.”
Source:
The number one medication in short supply in cancer treatment in developing countries is morphine! This is hard to imagine for someone from a developed nation with the myriad of pain treatments available.
One minute can feel like an hour in pain to a patient in pain.
***
“According to the Union for International Cancer Control (UICC), more than 3.3 million people with cancer are dying in pain, sometimes in agony, each year. Altogether, tens of millions of people are needlessly suffering pain, and a WHO estimate says that 600 million are going to suffer from untreated pain in their lifetime. The reason is simple: lack of access to basic, cheap and highly effective drugs, notably morphine. Around 70% of cancer deaths occur in low and middle-income countries, where just 6% of the opioid analgesics are consumed.”
Source:
- Fixing the holes in the opioid supply lines:
- Patients are still dying in agony despite concerned efforts over many years to change attitudes towards the use and control of opiates. Could a new initiative, which works with NGOs, governments and policy makers to address practical problems, finally hit the spot?
***
"Opioid analgesics are critical to the effective relief of cancer pain. Effective treatment is predicated on sound assessments, individually tailored analgesic therapy, and the availability and accessibility of the required medications. In some countries, pain relief is hampered by the lack of availability or barriers to the accessibility of opioid analgesics." (1)
***
"For patients with cancer, and especially those with advanced and incurable cancer, adequate relief of pain is a central goal of care [1, 2]. Indeed, adequate relief of cancer pain is considered to be a human right by many organizations of health care professionals [3–10], but is not yet enshrined in human right conventions." (1)Other Potential Partnerships
With excerpts from ESMO's Global Opioid Policy Initiative (GOPI):
"Major international efforts are underway to address the pandemic lack of availability and accessibility of opioids for the benefit of cancer patients (and other patients) in pain that affects the majority of the emerging economies and the developing world. The authors applaud recent progress on the global stage through inclusion of a specific target on access to essential medicines for cancer and other non-communicable diseases (NCDs) in the WHO Global NCD Action Plan 2013–2020. In addition, the WHO plan includes a specific indicator on morphine consumption in the associated Global Monitoring Framework (http://www.who.int/nmh/en/). Clearly, factors such as economic and social development are contributory; however, pilot projects in Uganda and Vietnam have demonstrated robustly that economic development is not an insurmountable barrier to the routine provision of pain medication for cancer patients suffering with severe pain."
"The Global Opioid Policy Initiative (GOPI) members are partnering with other key civil society and intergovernmental agency players in the global efforts that are underway to improve accessibility to opioids for patients with cancer pain. The EAPC, the WHO, and Help the Hospices are key partners in the Access to Opioid Medication in Europe (ATOME) project (www.atome-project.eu). The ATOME project is a multiyear collaborative project involving 10 organizations to improve access to opioids across Europe by identifying and removing barriers that prevent people from accessing medicines that could improve end-of-life care, to alleviate debilitating pain, and to treat heroin dependence. It focuses on 12 target countries: Bulgaria, Cyprus, Estonia, Greece, Hungary, Latvia, Lithuania, Poland, Serbia, Slovakia, Slovenia, and Turkey."
"The ‘Global Access to Pain Relief Initiative’ (GAPRI) is another major international effort led by the UICC (www.uicc.org/programmes/gapri). This ambitious collaborative project aims to contribute to the World Cancer Declaration target of universal access to essential pain medications by the year 2020."
"GAPRI is partnering with The Pain and Policy Studies Group at the University of Wisconsin to support and train clinical leaders in tandem with regulatory representatives from the same country through an International Pain Policy Fellowship Program [32]."
"Further, the American Cancer Society's ‘Treat the Pain’ campaign is implementing projects in Nigeria, Kenya, Uganda, India, and Haiti that are providing 2.8 million additional days of pain treatment."
"In addition to these three major multinational programs, critical contributions have been made by the International Palliative Care Initiative of the Open Society Foundation (OSF) led by Kathleen Foley and Mary Callaway (www.opensocietyfoundations.org), the Worldwide Palliative Care Alliance (WPCA) led by Stephen Connor (www.thewpca.org), the International Association for Hospice and Palliative Care (IAHPC) led by Liliana De Lima (http://hospicecare.com/home/), the Human Rights Watch Palliative Care Project led by Diederik Lohman (www.hrw.org/topic/health/palliative-care), Help the Hospices (www.helpthehospices.org.uk), and the National Institutes of Health (NIH) through the Center for Global Health of the National Cancer Institute (NCI) (www.cancer.gov/aboutnci/globalhealth) and the World Health Organization (WHO) (www.who.int)."
"Major international efforts are underway to address the pandemic lack of availability and accessibility of opioids for the benefit of cancer patients (and other patients) in pain that affects the majority of the emerging economies and the developing world. The authors applaud recent progress on the global stage through inclusion of a specific target on access to essential medicines for cancer and other non-communicable diseases (NCDs) in the WHO Global NCD Action Plan 2013–2020. In addition, the WHO plan includes a specific indicator on morphine consumption in the associated Global Monitoring Framework (http://www.who.int/nmh/en/). Clearly, factors such as economic and social development are contributory; however, pilot projects in Uganda and Vietnam have demonstrated robustly that economic development is not an insurmountable barrier to the routine provision of pain medication for cancer patients suffering with severe pain."
"The Global Opioid Policy Initiative (GOPI) members are partnering with other key civil society and intergovernmental agency players in the global efforts that are underway to improve accessibility to opioids for patients with cancer pain. The EAPC, the WHO, and Help the Hospices are key partners in the Access to Opioid Medication in Europe (ATOME) project (www.atome-project.eu). The ATOME project is a multiyear collaborative project involving 10 organizations to improve access to opioids across Europe by identifying and removing barriers that prevent people from accessing medicines that could improve end-of-life care, to alleviate debilitating pain, and to treat heroin dependence. It focuses on 12 target countries: Bulgaria, Cyprus, Estonia, Greece, Hungary, Latvia, Lithuania, Poland, Serbia, Slovakia, Slovenia, and Turkey."
"The ‘Global Access to Pain Relief Initiative’ (GAPRI) is another major international effort led by the UICC (www.uicc.org/programmes/gapri). This ambitious collaborative project aims to contribute to the World Cancer Declaration target of universal access to essential pain medications by the year 2020."
"GAPRI is partnering with The Pain and Policy Studies Group at the University of Wisconsin to support and train clinical leaders in tandem with regulatory representatives from the same country through an International Pain Policy Fellowship Program [32]."
"Further, the American Cancer Society's ‘Treat the Pain’ campaign is implementing projects in Nigeria, Kenya, Uganda, India, and Haiti that are providing 2.8 million additional days of pain treatment."
"In addition to these three major multinational programs, critical contributions have been made by the International Palliative Care Initiative of the Open Society Foundation (OSF) led by Kathleen Foley and Mary Callaway (www.opensocietyfoundations.org), the Worldwide Palliative Care Alliance (WPCA) led by Stephen Connor (www.thewpca.org), the International Association for Hospice and Palliative Care (IAHPC) led by Liliana De Lima (http://hospicecare.com/home/), the Human Rights Watch Palliative Care Project led by Diederik Lohman (www.hrw.org/topic/health/palliative-care), Help the Hospices (www.helpthehospices.org.uk), and the National Institutes of Health (NIH) through the Center for Global Health of the National Cancer Institute (NCI) (www.cancer.gov/aboutnci/globalhealth) and the World Health Organization (WHO) (www.who.int)."
Global Health Pain Relief Initiatives
Initiatives that are already underway that could utilize the Opioid GPS platform:
- Treat the Pain: http://www.treatthepain.org/our_approach.html
- Formed by Union for International Cancer Control (UICC) and the American Cancer Society (ACS) to create the Global Access to Pain Relief Initiative (GAPRI)
Potential Key Partnerships
Collaborating Partner Organizations
1
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African Organisation for Research and Training in Cancer (AORTIC)
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2
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African Palliative Care Association (APCA)
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3
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Asia Pacific Hospice Palliative Care Network (APHN)
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4
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Chinese Society of Clinical Oncology (CSCO)
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5
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Foundation Akbaraly, Madagascar
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6
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Help the Hospices
|
7
|
Indian Association of Palliative Care (IAPC)
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8
|
International Association for Hospice & Palliative Care (IAHPC)
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9
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Japanese Society of Medical Oncology (JSMO)
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10
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Latin American and Caribbean Society of Medical Oncology (SLACOM)
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11
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Latin American Association for Palliative Care (ALCP)
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12
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Malaysian Oncology Society (MOS)
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13
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Middle East Cancer Consortium (MECC)
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14
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Multinational Association of Supportive Care in Cancer (MASCC)
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15
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Myanmar Oncology Society
|
16
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Open Society Foundations (OSF)
|
17
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Worldwide Palliative Care Alliance (WPCA)
Source:
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References
A collection of some of the references we have utilized for background information:
References:
- The Global Opioid Policy Initiative (GOPI) http://www.esmo.org/Policy/Global-Opioid-Policy-Initiative
- 3. How can journalists help raise the profile of cancer and get it on the political agenda in countries where infectious diseases get most attention, reliable data are scarce, doctors are reluctant to talk and editors prefer cheery topics? Two award-winning reporters speak of the challenges they face
- 4. Fixing the holes in the opioid supply lines:
- Patients are still dying in agony despite concerned efforts over many years to change attitudes towards the use and control of opiates. Could a new initiative, which works with NGOs, governments and policy makers to address practical problems, finally hit the spot?
- 5. Pain in the Developing World: HOW POORER NATIONS ARE LOSING OUT ON PALLIATIVE CARE
- 6. Freedom From Pain (documentary): http://www.aljazeera.com/programmes/peopleandpower/2011/07/2011720113555645271.html
- 7. Managing Acute Pain in Developing World: http://www.iasp-pain.org/files/Content/ContentFolders/Publications2/PainClinicalUpdates/Archives/PCU_19-3_web_revised_1390260400113_4.pdf
- 8. Nickerson, Jason W., and Attaran, Amir, "The Inadequate Treatment of Pain: Collateral Damage from the War on Drugs," PLoS Medicine (Cambridge, United Kingdom: Public Library of Science, Jan. 2012) Vol. 9, Issue 1, p. 1.
- 9. Marie-Josephine Seya, Susanne F. A. M. Gelders, Obianuju Uzoma Achara, Barbara Milani, and Willem Karel Scholten, "A First Comparison Between the Consumption of and the Need for Opioid Analgesics at Country, Regional, and Global Levels," Journal of Pain & Palliative Care Pharmacotherapy. 2011;25:6–18. ISSN: 1536-0288 print / 1536-0539 online. DOI: 10.3109/15360288.2010.536307
- 10. Jürgens, Ralf; Csete, Joanne; Amon, Joseph J.; Baral, Stefan; and Beyrer, Chris, "People who use drugs, HIV, and human rights," The Lancet (London, United Kingdom: August 7, 2010) Vol. 376, Issue 9739, pp. 478-479.
- Potential celebrity partner: New York Giants defensive end Mathias Kiwanuka
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