Untreated Cancer Pain a ‘Scandal of Global Proportions’, Survey Shows

I wrote this article for the Independent, a local English daily newspaper, it is going to be published on Jan 20 in a special health magazine they publish weekly, called The Stethoscope.  I am trying to raise the profile of this issue in Bangladesh as it affects most of my patients.


Untreated Cancer Pain a ‘Scandal of Global Proportions’, Survey Shows

When a child develops leukemia, cancer cells invade the bone marrow, multiplying so rapidly that this space inside the bone becomes completely full of cells, pressing powerfully against the surrounding bone. This is extremely painful. If this child happens to live in Bangladesh, it is likely that he or she will not have access to any pain medications stronger than paracetamol. This is despite the fact that effective stronger pain medicines are available at a relatively low cost. This is not just a problem in Bangladesh. Globally, more than 5 billion people live in countries where access to these medications is extremely limited or not available at all.

The recent ground-breaking results of the Global Opioid Policy Initiative (GOPI) found that in most countries, multiple barriers prevent the routine use of inexpensive and effective opioid pain medications, such as morphine. "When one considers that effective treatments are cheap and available, untreated cancer pain and its horrendous consequences for patients and their families is a scandal of global proportions," say Nathan Cherny lead author of the report. Pain relief is widely accepted as a patient right and a human right, and the World Health Organization (WHO) has called for the integration of pain relief into the care of all people with cancer.

Although it is important to take precautions to prevent misuse of opioids, many developing countries, including Bangladesh, have extremely strict opioid control policies. This limits the availability of opioids for legitimate use. Currently low and middle income countries account for only 7% of global opioid consumption despite having 80% of the world’s population. “The reality is that most of the world’s population lacks the necessary access to opioids for cancer pain management” Cherny says.

The WHO Model List of Essential Medicines, recommends 7 essential opioids be available in all countries. In Bangladesh only 3 of these medications are on the national formulary and none are actually available more than half of the time.  Over-regulation further limits the supply of opioids in Bangladesh, as only cancer specialists and surgeons are allowed to prescribe opioids.

Due to public misperceptions that opioids should only be used in patients who are dying, many people with pain are unaware that they may benefit from these medications. Doctors often lack training on how to safely prescribe opioids and may be afraid to do so, especially for children. Adequate training and education are essential to improving the ability of doctors to manage pain appropriately.

What are the next steps as we move forward?  No single solution will be appropriate for all countries. The solutions must be adapted to the local context. We can learn from developing countries where significant progress has been made, including: Uganda, Vietnam, and Nepal. In each of these countries, an essential early step was reform of national drug control and public health policies that were preventing medical access to opioids. Ensuring that pain relief policies are developed as part of the National Cancer Control Plan is also an important step. Lastly, civil society and health advocates must work to engage the general public to create a movement for change. 

What is Palliative Care for Children?

You may be wondering exactly what is palliative care for children?  The majority of people don't know what palliative care is.  Often the first or only experience that a person has with palliative care is when a family member with cancer is dying.  

Palliative care for children can be quite different.  The New Yorker published an excellent article about palliative care for children this week!  You can read the first page here:, and if you would like a copy of the whole article, please email me.
http://www.newyorker.com/reporting/2014/01/20/140120fa_fact_groopman

First a definition: (from the World Health Organization in 2002)

• Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family.
• It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
• Palliative care seeks to alleviate the child's physical, psychological, and social distress.
• Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
• It can be provided in tertiary care facilities, in community health centres and even in children's homes.

So as you can see palliative care is really a specific type of approach to caring for someone. It sees them in the context of their whole life situation and tries to address all of their needs. This approach can be quite different from the care a patient receives in the rest of the field of medicine; care is often very focused on eradicating or controlling a particular disease.  Palliative care can be given at the same time as attempts at curative treatment.  You don't have to stop curative therapy to start palliative care.

You don't have to stop curative therapy to start palliative care.  Instead they can proceed together.  We often say that we are "hoping for the best, but planning for the worst."

Palliative care is best delivered by an inter-disciplinary team.  This team can include nurses, physicians, social workers, psychologists, child life specialists, chaplains, art/music/recreation therapists, and volunteers. The team works together to address all of the needs of the child and family.

What about the term "hospice"?  It is often used synonymously with palliative care, but the definition differs in different countries.  In Canada and Europe, hospice refers to a free standing building where patients with life limiting diseases can stay and receive palliative care.

In the USA, hospice refers to a specific Medicare (government funded) health benefit which involves receiving terminal care in the community (in the home or a hospice). The hospice program is limited to the last 6 months of a person's life.

End of life care (Terminal care) is not the same as palliative care.  End of life care refers to providing care when it is clear that a person is quite close to dying, generally in the last weeks or days of their life.

Which children need palliative care?  Children with life-threatening or life-limiting diseases will benefit from palliative care.  A life-threatening illness is a disease where cure may not be possible, most cancers are in this category.  Life-limiting illness is a disease where there is no realistic possibility of cure, and the child is not likely to life into adulthood due to the disease or its complications.  Duschenne muscular dystrophy and other genetic diseases are examples.  Most of the diseases in this category are very rare and most people are not familiar with them.

When should palliative care start?  The American Academy of Pediatrics recommends that Palliative Care start when a child is diagnosed with a life threatening or life-limiting illness, the involvement of the palliative care team will increase as the child becomes more unwell and has more symptoms.  Surveys of families whose children have died show that families prefer an early referral to the palliative care team as the feel that their child's quality of life is improved as a result.

This shows how the palliative aspects of care should increase as the child's illness progresses.

The financial burden of having a child with cancer

Many of the families who I work with have an income of less than $2/day (per person).  Having a child diagnosed with cancer means a huge financial burden for them.  Not only do they have to pay for all of their child's medications, but often the family must travel long distances to the hospital.  Even if it only costs $3 to take the bus each time, the family must often make this trip multiple times per week, and one parent's income is often reduced or lost as a results of having to accompany their child to the hospital for all of these visits.  Families are often forced to sell all the land that they own or ask relatives to lend them money to afford to continue to treat their child.

The hidden cost of their child's illness adds up in other ways as well; who will care for the family's other young children when one parent must stay in hospital with the sick child?  For the mother, who stays with her child in the hospital, how will she afford food?  At BSMMU only mothers (or other female relatives such as sisters, aunts, grandmothers) are able to stay overnight when their child is hospitalized because there are no washroom (toilet) facilities for male relatives.  While the child and mother stay in hospital, the mother must find a way to prepare food and clean the clothes.  Often families arrive at the hospital with almost nothing after travelling long distances.

Cost add up further the longer a chid is hospitalized.  All IV fluids, needles, syringes, blood tests, x-rays and even bandages must be purchased by the family.  After receiving intensive chemotherapy, the child may become immunocompromised and develop a life-threatening infection, further adding to the costs for a family.  They must purchase more IV equipment as well as IV antibiotics to treat the infection.  

Transfusions of blood and platelets are also needed for children with cancer as their body's ability to make red blood cells and platelets is impaired by chemotherapy. When this happens a family has to frantically make calls trying to find an available relative or friend who has the correct blood type and can to go to the transfusion department to donate blood.  Even with a donation from a relative, the cost of a transfusion is substantial.  If the family can't find someone, then there may be a chance to purchase blood but the cost is almost 10 times as high, is often unavailable, and could be contaminated with hepatitis, HIV or another infection.  There is no blood bank system in Bangladesh the way there is in Canada.  

A mother and her children on the children's cancer ward in Malawi

In Malawi, World Child Cancer has started distributing weekly 'welcome packs' to all mothers when their child is admitted to hospital.  The kit contains essentials such as cooking oil, soap, sugar, toilet paper, tea, matches, toothpaste and a bundle of firewood.  The pack costs less than $5 to provide, but has proved effective as more families continue treatment since hospitalization are now slightly more affordable.  This article describes the situation in Malawi where WCC is also working:
http://www.ft.com/intl/cms/s/2/9612d9ca-68dd-11e3-996a-00144feabdc0.html#axzz2pmM7cUDp

In Bangladesh, there are no cooking facilities for the ward. Mothers often prepare the food on a piece of newspaper on the floor, cooking it in an electric rice cooker.  A more hygienic cooking environment, away from the bedside with proper places to wash cooking utensils would improve the safety of the food that the children are eating.  

What about the food the hospital supplies?  It is not clean and because it is spicy the children will not eat it.  Lunch and dinner is the exact same thing every day.  Not all that appetizing....

The Critical Lack of Access to Essential Pain Relieving Medications in the Developing World

The European Association for Palliative Care (EAPC) and European Society for Medical Oncology (ESMO) have been speaking out about the lack of access to opioids in developing countries.  The USA consumes 51% of global opioids annually despite having only 5% of the world's population.  Only 5% of opioids (like morphine) are used by 80% of the world's population.  Meaning that most people who have severe pain, from surgery, cancer or other medical illnesses, never get pain relief.  Imagine dying without any medication to relieve your pain.  Imagine watching your child suffer in this way.

Access essential pain relieving medications for children with cancer is a huge problem in Bangladesh. There are very few formulations of opioids available.  The formulations that are available are not suitable for children as the doses are too large (designed for adults).  There are very restrictive policies about which pharmacies can dispense opioids and patients often live hours away from the closest location where they could get opioids.  Doctors are very hesitant to prescribe opioids due to lack of knowledge about how to do so and fears of causing addition.  (Which is not an issue as children need the opioids for pain).

Surprisingly, cost is not a big issue as producing the simplest form of morphine, which would be effective for many children with pain, costs pennies per day.  However, the low cost means that pharmaceutical companies are not interested in producing this type of morphine as there is not much money to be made and there is essentially no demand for the product at this time.

Morphine is on the most recent (April 2013) List of Essential Medicines for Children from the WHO.  It should be available in all countries, so that children who have pain do not have to suffer.

New global study led by ESMO reveals a pandemic of intolerable pain affecting billions, caused by over-regulation of pain medicines

Lugano, Switzerland –- A ground-breaking international collaborative survey, published today in Annals of Oncology, shows that more than half of the world’s population live in countries where regulations that aim to stem drug misuse leave cancer patients without access to opioid medicines for managing cancer pain.

The results from the Global Opioid Policy Initiative (GOPI) project show that more than 4 billion people live in countries where regulations leave cancer patients suffering excruciating pain. National governments must take urgent action to improve access to these medicines, says the European Society for Medical Oncology, leader of a group of 22 partners that have launched the first global survey to evaluate the availability and accessibility of opioids for cancer pain management.

http://www.esmo.org/Press-Office/Press-Releases/ESMO-Press-Release-Untreated-Cancer-Pain-a-Scandal-of-Global-Proportions-Survey-Shows

http://www.esmo.org/content/download/30697/609667/file/UICC_Palliative_Care_backgrounder_Nov2013.pdf

This graph shows the global distribution of morphine consumption vs. percentage of world population.  More than 4 billion people live in the countries which use only 5% of global morphine supply. 

New Blog Title and Colour Scheme

I thought it was time to change things up a bit.  As this is my 100th post.  I hope you like it.

Bangladesh's amazing progress in health care outcomes

There is a very interesting series of articles which have been published in the Lancet over the past several weeks discussing health care in Bangladesh.

Here is a link to one of the articles, you will see the others on the right side bar of the page.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)62060-7/fulltext

Although Bangladesh continues to rank as one of the poorest countries in South Asia, over the past 4 decades, the country has been able to make huge strides to improve infant and child health.  Indeed the progress that Bangladesh has made in improving life expectancy, as well as, infant, child, and maternal mortality is remarkable given the country's poverty.

The Lancet articles describe some of the reasons for these impressive improvements.  Specifically Bangladesh has specifically focussed its health programs on women and the poor.  This had led to larger improvements in health indicators in the poorest quintile of the population compared to the upper quintiles.  This graph shows the impressive improvements in child (under age 5) mortality over the past 40 years.

Bangladesh has worked very closely with the local NGO to community to focus on achieving its health goals.  Specifically the NGO sector has been very involved in the Expanded Programme on Immunization. On National Immunization Day in 2012, over 600 000 workers were able to distribute polio vaccines and Vitamin A capsules to 24 million children! The vaccination rates for children in Bangladesh are better than those of all other countries in South Asia.

Fertility has also declined dramatically from 6.3 births per woman in the early 1970's to 2.5 in 2010.  Fertility rates vary across the country with higher rates persisting in the eastern areas due to these areas being more remote and having less access to local health services.

With each of these areas for gain (mortality, immunization, and fertility), local community health workers have been instrumental in achieving the progress.

For example: (To quote from one of the articles)

"The present family planning programme in Bangladesh began in 1977 as an experimental pilot project in the Matlab subdistrict, with young, educated women to provide family planning services directly to the homes of couples. The effect on fertility reduction was noted almost immediately. After testing and modification to assess feasibility and success, the programme was gradually scaled up across the country through existing government systems. ... This approach led to deployment of thousands of full- time female fieldworkers (family welfare assistants) under the family planning wing of the Ministry of Health and Family Welfare. Each family welfare assistant undertook community-based distribution of family planning methods through household visits every two months in her catchment area of about 4000 people. With the supervisory mechanisms in place, coverage and intensive follow-up underscored much of the success of this approach."

Poverty, low female autonomy, and cultural restrictions on the mobility of women have meant that this approach is extremely effective despite ongoing extreme poverty, low levels of female education, and persistent young age of marriage.  These factors are generally closely correlated with female fertility in developing countries.