The International Diabetes Advocacy Coalition (IDAC) Strategic Plan
The International Diabetic Advocacy Coalition (IDAC) is a patient-led advocacy initiative of CSDS Africa, the Dickson Foundation, Diabetes West Africa and Cencla International.
The Centre for Strategic and Defence Studies, Africa (CSDS Africa) has public policy and legislative priorities in two areas: prevention of type 2 diabetes and improved screening, detection care for people living with diabetes.
Cencla International (CI) is a medico-legal nonprofit that works to keep policy-makers’ attention on national, regional and global diabetes and works with healthcare professionals at the local level to improve diabetic health delivery systems and create opportunities that significantly improves diabetic patients physo-social wellbeing, and promotes medico-legal awareness, dietary innovations, mealplans and fitness events to support goodliving.
The Strategic Plan
This 5 year Strategic Plan is based on the Global Diabetes Plan (GDP) of the IDF which calls on the United Nations and its agencies, governments, civil society, the private sector and the global diabetes community to turn the tide of diabetes now.
Our aims aligns with the stated purpose of the Global Diabetes Plan which is namely to:
1. Reframe the debate on diabetes to further raise political awareness of its causes and consequences and the urgent need for action at the global and country level to prevent and treat diabetes.
2. Set out a generic, globally consistent plan to support and guide the efforts of governments, international donors and IDF member associations to combat diabetes.
3. Propose proven interventions, processes and partnership for reducing the personal and societal burden of diabetes.
4. Support and build on existing policies and initiatives such as the WHO 2008-2013 Action Plan for the Global Strategy for the Prevention and Control of Non-communicable Diseases.
5. Strengthen the global movement to combat the diabetes epidemic and to improve the health and lives of people with diabetes.
Diabetes Mellitus has been declared one of the major health and development challenges of the 21st century.
It is a health issue that has reached for individuals, nations and the world a crisis level. We cannot afford to delay action any longer; or leave the fight to others, because the financial burden, human misery and suffering caused by diabetes is both unacceptable and unsustainable.
Every year, over four million people die from diabetes, and tens of millions more suffer disabling and life-threatening complications such as heart attack, stroke, kidney failure, blindness and amputation. Diabetes is also implicated in and has negative consequences for certain infectious diseases, other non-communicable diseases (NCDs) and for mental health.
Diabetes is not only a health crisis, it is a giant global catastrophe. Governments worldwide are struggling to meet the cost of diabetes care. Costs to employers and national economies are escalating and every day low-income families are being driven into poverty by loss of earnings due to diabetes and the life-long costs of healthcare.Already, 366 million people have diabetes and another 280 million are at identifiably high risk of developing diabetes. If nothing is done, by 2030 this number is expected to rise to 552 million with diabetes and an additional 398 million people at high risk.
Three out of four people with diabetes now live in low-and middle-income countries. Over the next 20 years, Africa, Middle East and South-East Asia regions will shoulder the greatest increase in diabetes prevalence. Even in rich countries, disadvantaged groups such as indigenous people and ethnic minorities, recent migrants and slum dwellers suffer higher rates of diabetes and its complications. No country, rich or poor, is immune to the epidemic.
We’re a Community of devoted Diabetes Advocates
We put our community first because we are the community. We are also public interest lawyers – with a number of our members also diabetic doctors, endocrinologists, dieticians, fitness professionals, diabetic journalists and diabetic educators.
Public interest lawyers are trained to place the interest of their communities above their own, and to strive to obtain respect for the rule of law. Public interest law itself has been described as legal work done on behalf of individuals, groups, and causes that are underserved by the mainstream bar.
Now, more than ever, IDAC believes that people living with diabetes need to come together to stand up for effective diabetes policy at the national, regional and global levels.
As patients and especially legal constituents, our voices need to be an ongoing part of the policy conversation. Diabetes advocacy is like diabetes care; both are long-term processes with no quick fixes, and yet diabetes advocacy remains an under-served jurisdiction. If this is to change. Patient advocacy needs to be strengthened. In Africa, the popular image of a crusading patient advocate was usually embodied by a compassionate foreign physician – a determined European or American researcher. In that scenario, patients are portrayed as passive — often helpless — beneficiaries of the professionals’ selfless calls for better care.
It’s not a good match with the model of a successful social movement, where those most directly affected are on the front lines. This was the structure of the independence struggle, the civil rights movement, the anti-apartheid campaign and the labor movement of years ago. We therefore aim to flip over the usual health care advocacy script, this time putting the patients in the lead roles.
All of us – those in the frontline, have actually been touched diabetes, and we have a shared intetest and committment to serve as strong, visible volunteer advocates in our communities.
Our 9 Prioritities
1. Urge Government to implement Universal Health Care (UHC) a central piece of the SDGs agreed upon in 2015.
UHC is one of the major global policy issues at the level of the UN on diabetes. The World Health Organisation defines Universal Health Coverage as a situation where all individuals and communities receive the health services they need without suffering financial hardship. UHC is a central piece of the Sustainable Development Goals and, in 2015, all UN Member States including our Government committed to achieving UHC by 2030. Diabetes requires lifelong management. Without UHC, many people with diabetes can face catastrophic health expenditures and impoverishment particularly the poorer segment – many of us spend about GHS 800 – 1,600 on food, medication, medicare, etc . We need some urgent action. Locally, we need to organize to send letters to the UN and our Health policy-makers.
2. Speak Out against High Cost of Insulin and Diabetic Drugs, Urge Removal of Taxes and other Fiscal Tarriffs on Diabetic Drugs and Need for cheaper safer generic diabetic drugs.
An advocate is a supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson on issues that matter. An authentic advocate must be someone the community can trust to act independently. Currently, this is challenge.
Insulin treatment for Type 1 diabetes today takes up half the average family income in some countries. In many countries today, many patients are forced to skip doses and ration their supplies, often leading to emergencies and even death.
The world’s big diabetic organisations like the American Diabetes Association and JDRF take large sums of money from the 3 pharmacuetical companies that sell insulin to patients, and thus have avoided any activism on for example insulin-pricing issues. In 2015, the American Diabetes Association alone received $2.5 million from insulin manufacturer Eli Lilly. With such compromises they sre no longer able to remain independent authentic voices for diabetic patients.
3. Protect Consumers of Diabetic Products and Medical Services.
Diabetics as a group consume many different products and services, therefore the protection of diabetic consumers is a matter of importance. Consumer protection itself covers laws and organisations designed to ensure the rights of consumers , as well as fair trade competition and accurate information in the market place
In 1962, John F. Kennedy articulated 4 fundamental rights of consumers: the right to safety, to be informed, to choose, and to be heard. Consumer Protection has become as increasingly important interest incorporated in many national constitutions.
Intensifying consumer protection campaigns promotes the right to health, a right recognised under the ACHPR. There are serious synergies between public health and consumer protection, among them false, misleading and deceptive medical representations, all of which are vulnerable to challenges under Ghana’s 1992 Constitution and Sale of Goods Law – in Ghana the Sale of Goods Act provide safeguards to buyers of goods if goods purchased do not fulfill the express or implied conditions and warranties
4. Urge Improvements in NHIS to protect families with diabetes patient(s) against huge financial burden.
Recent studies suggest that the economic burden of diabetes is high in Ghana, with a catastrophic effect on households. Except for NHIS, patients’ financial support mainly comes from personal resources rather than public resources. Social supports and improvements in NHIS are needed to protect households with diabetes patient(s) against financial risks.
The continuing prohibitive prices of diabetes medications and supplies in Ghana could be addressed by removing taxes on such supplies.
5. Seek Continuous Improvement in National Diabetes Care and Public Education.
Effective health systems are needed to cope with the coming surge of diabetics in sub-Saharan Africa (SSA). Although chronic care health systems in SSA have developed significantly in the last decade, the capacity for managing diabetes remains in its infancy. We identified pilot projects to enhance these capacities. The scale-up of these pilot interventions and the integration of diabetes care into existing robust chronic disease platforms may be a feasible approach to begin to tackle the upcoming pandemic in diabetes.
Research by Amoah AG, et al. in 2000 revealed how a national diabetes care and education programme developed in Ghana, through international collaboration of medical schools, industry and government health care institutions ended positively. The approach was by way of trained diabetes teams consisting of physicians, dietitians and nurse educators at two tertiary institutional levels (teaching hospitals) who in turn trained teams consisting of physicians, dietitians or diettherapy nurses, nurse educators and pharmacists at regional and district/sub-regional levels to offer care and education to patients and the community. In only 3 years, all regional and about 63% of sub-regional/district health facilities had trained diabetes health care teams, run diabetes services and had diabetes registers at these institutions. Additionally, a set of guidelines for diabetes care and education was even produced. All programme objectives with the exception of one (deployment of diabetes kits) were met. Distances to be travelled by persons with diabetes to receive diabetes care had been reduced considerably. The success of the project gave an impetus to the collaborators to extend the programme to the primary health care level. The success of this model and others suggests that advocates should urge improvements in national diabetes care and educational programme.
6. Urge More Preventive Public Education and Targetted Deloyment of Diabetes Kit to Assist the Poor.
A recent study reveals an acute non-availability of diabetes kits to the poor in Ghana. A Diabetes Specialist Nurse who organises clinics in Ghana in her spare time has been appealing for medical equipment.
Anna Vanderpuye, from London’s Kings College Hospital, is looking for insulin, test strips, blood glucose monitors, a HbA1c monitor and a cholesterol testing kit for her ‘Diabetes Health Days’. She has staged the free sessions in the West African county every World Diabetes Day, on November 14, for the last six years.
Last year Anna saw more than 1,800 people over five days. As well as teaching the basics, talking about complications and prevention, Anna also carried out blood tests, checked blood pressure and referred people to doctor.
She said: “I just have a passion to help. I use my annual leave and I just offer some of my services. It’s a passion, something I love doing.” The clinics took place in small towns churches in Ghana’s eastern and central regions as we as the coastal city of Tema and Accra, the country’s capital and largest city. To donate medical supplies, email firstname.lastname@example.org.
Key however to the policy concerns in chronic illness care is prevention and cost-effective biomedical care. Two main findings have emerged from prior studies. The majority of studies have
reported poor knowledge of chronic conditions and illness management regimes as key barriers to compliance and appropriate self-care (e.g. Kamel, Badaway, el-Zeiny, & Merdan, 2000; Nwoga, 1994).
7. Promote Greater Psycho-Social Interventions, Support Field Studies and New Technologies for Diabetics.
A recent paper published by the London School of Economics titled Living with Diabetes in Rural and Urban Ghana: A Critical
Social Psychological Examination of Illness
Action and Scope for Intervention ( by Ama De-Graft AIKINS, LSE) suggested that with the exception of studies that underscored psychosocial dimensions of illness experiences and recommended psychosocial interventions, the general trend within the field has been to prioritize educational interventions.
Activities in the area of pychosocial support presents an important step forward in the neglected arena of chronic illness research. We aim to translatethe knowledge gathered from the field into better biomedical practice and to develop educational programmes to improve knowledge and health behaviour among diabetics and wider populations
8. Advance Low Carb Diet and Fitness as Necessary Part of National Security Goals.
The epidemiological and social diagnosis information in recent times shows an alarming increase in the prevalence rate of overweight , diabetes and obesity over the last decade in developing countries including Ghana The distribution of adulthood nutritional imbalance is for ecample shifting from under nutrition to over nutrition, this poses serious challenge to governments and individuals.
Recent statistics from WHO GLOBAL InfoBase indicates, that Ghana is ranked 10th and 26th respectively with specific overweight prevalence figure of 35.6% and 32.5% among men and women, from obesity range of 0 to 21.3%, Ghana is rated at the 11th position, with a prevalence rate of 4.8% for men. For women’s range of 0 to 43.2%, Ghana is ranked in the 26th position, with a prevalence rate of 5.9%. Similarly, a transnational study involving urban women in 24 African countries between 1991 and 2014 on the prevalence and time trends in overweight and obesity reveals that in Ghana, overweight has almost doubled while obesity has tripled between 1993 and 2014.
According to WHO , the overall consequences of overweight and obesity are numerous and diverse, ranging from heightened risk of premature death to a number of non-fatal but debilitating grievances that have serious implications on one’s quality of life. From this perspective the current high starchy dietary and low exercising syndrome which exist among the population in Ghana is not just a health but a national security issue.
We shall make battling obesity, diabetes and sedentary lifestyles our signature causes. A lack of fitness is not just a health issue but a national security issue, We shall therefore work to overhaul diets and exercise programs in Ghana, as a model for people elsewhere.
9. Raise Awareness of Medico-Legal Issues embedded in Diabetes Management to Promote Patient Standard of Care.
A legal duty to use proper care and skill attaches to the work of medical and other healthcare specialists. Thus, when a doctor practised medicine, a duty to the patient came into being, arising from the doctor’s status as a member of the medical profession. The past 100 years of professional liability has been dominated by the tort of negligence, and not surpringly the liability of the doctor has been based on negligence.
As key stakeholders of the system it is in the public interest that lawyers such as ourselves have clearly a critical responsibility to safeguard all patients against negligent or even discriminatory treatment. Injured patients have the right to establish the truth, seek an apology, and to take remedial action which prevents healthcare professionals from making the same mistakes with another patient in the future. Lawsuits or liability could lie against, physicians, ophthalmologists obstetricians for complications created by negligent care of diabetic patients. Compensatory awards could also arise in appropriate cases.