Patients are scared to see that their health will be affected by the
saving policies of our national health systems. We also fear that the access to
adequate healthcare will depend on the family income, and unequal rights to obtain
the best available treatments will be accepted as an inevitable universal fact.
We see how people around the world in countries without reimbursement
lose their savings, their houses and everything they worked for if they want a
chance to have a better quality of life or life expectancy. We also see that
many healthcare systems in Europe provide a better coverage than what I just
described and it is jeopardized by the financial crisis we are going through.
Some Governments react in a panic and without a proper evaluation of the
damages their measures to cope with the crisis will cause to the healthcare
system. Although many generics are as good as the reference drug, also many of
them might negatively affect the health of the patient because of subtle but
key differences such as how long the active ingredient stays in the body and
whether it reaches or not the therapeutic target.
In Spain we are witnessing real horrors due to the royal decree that
forces to prescribe the active ingredient instead of the brand. The more fatal
and difficult to treat is the disease, the more damage is done through
pharmacological malpractice in public hospitals.[1]
There is a need to increase the efficiency of the healthcare system; we
have no doubt about it. But improving the efficiency does not mean to decrease
the expenditure in the short term to increase it in the medium and longer
terms.
Adequate investment in medicines reduces the number of visits to the
family doctor, the number of costly tests done by specialists, the average
length of stay at the hospital, the absenteeism at the workplace, the cost of
the caregivers that have to dedicate their time and workforce to their
relatives instead of working and paying taxes increasing the circulation of
capital in the market and feeding the meager treasure of the nation.
I cannot help but wonder: where did economists that preach to reduce
expenditure regardless of the negative impact on the country’s economy study
their careers?
The world is changing. Patients are more and more influential at every
level. Our capacity to organize ourselves, to lobby and to make pressure groups
is growing. We are receiving training, we are shifting from the “poor me look
how much I suffer” to taking an active role in the management of our diseases
and making decisions about treatment and therapeutic options.
There is a long way to go, in most countries, HTA agencies do not even
think of the possibility of having a patient to give an input about pricing and
reimbursement, however, it is the patient that has more at stake in the whole
process.
We also play a role in the medicines’ market. We share information about
what drugs gave us the best result for this or that disease. What are the
unbearable side effects or how to cope with the unavoidable side effects of a
pharmacological treatment. We know what medicines we want in the market and
which ones we want to see unlicensed.
We do not prescribe, neither have we ever wanted to do it, but we do
share information and knowledge about what we receive as a prescription.
As much as I have previously criticized the saving policies of the
Ministries of Health, we are very keen in preserving our access to healthcare
and medication. Nobody is between the hammer and the anvil as we are. The
extremely high prices of drugs render it difficult for our governments in times
of financial distress to provide adequate funding for each and every need.
There are many more factors to take into account, but a whole revision of
unnecessary or overpriced services related to healthcare would not be to the
point of this presentation. Just let me highlight that I don’t put all the
weight of healthcare expenditure on reimbursement.
I have recently read an article entitled “the fiction behind the cost of
new drugs” (http://careandcost.com/2012/02/22/the-fiction-behind-the-cost-of-new-drugs/), it mentions that AstraZeneca’s
after-tax profit margin in 2011 was over $10 billion, nearly twice what it
spent on R&D.
I cannot and will not go over the accounting of each and every
pharmaceutical company. I am fully aware that 2011 has meant a loss of income
that means a terrible blow… But let me tell you that I have trouble to
understand that reducing an after-tax profit margin that is counted in billions
means an out of proportion catastrophe and almost the end of the world.
Do patients want the pharmaceutical companies make a profit? We most
certainly do. Research, training of healthcare professionals, support projects and
programs for patients, etc come from the pharmaceutical sales. We would never
want to see all those funds that are vital for us vanishing in thin air.
Do patients want a healthcare system that can afford the reimbursement
of the most expensive drugs? There is no doubt whatsoever about it.
Can patients balance the benefits they obtain from the pharmacological
treatments and an adequate price? We are patients, not dumb flocks of sheep!
Lawyers, medical doctors, economists, high profile professionals are not
disease free, they are also patients and we claim our right to make decisions
on our health at every level, which includes our intervention in the design of
pricing and reimbursement policies.
Additionally, patients’ associations are there to provide support to the
average citizen, we speak the same language, and we know what they need and we
can provide useful information so that experts can do more accurate QALY and
DALY calculations. There is a term that is not so well known when it comes down
to appraise and assess the impact of a new health technology, its monetary
value and the non tangible benefits or downsides. It is the HRQL measures,
Health Related Quality of Life measures. These measures provide information
about the effects of an illness and how that illness affects a person’s
day-to-day life.
Economists and medical personnel, in spite of what they may believe, do
not really know how the life of a person living with a particular illness is.
They can imagine, but they lack personal experience.
Last but not least, we would like stakeholders to consider that
patients’ organizations have an added value within the system.
Patients’ organizations have a support system that is not considered as
Health Technology. We like to be independent, but sometimes it seems that we
are not in the picture at all.
I would like politicians, decision makers, industry, and HTA agencies to
give a thought to these questions:
-
What
is the value of psychosocial support?
-
How
is the quality of life different for a patient that benefits from a help line?
-
How
much efficient is the system when patients are empowered and take control over
the management of their disease? (better compliance with treatment, less visits
to the hospital, better therapeutic choices…?)
-
What
is the impact of guides for patients that are adapted to all levels of
education and have an understandable language?
-
What
is the impact in the healthcare system of dissemination campaigns for
prevention and early diagnose carried by patients’ organizations?
-
How
does the view and the performance of physicians change when they establish
cooperation with patients’ organizations?
-
What
is the value of patients in pharmacovigilance and their reports on day-to-day
testing once the drugs are on the market?
Just to give an example, the Spanish National Pulmonary Hypertension
Association is organizing the celebration of the first World Pulmonary
Hypertension Day click here for mor info about WPHD. There will be a scientific symposium where PH physicians will
learn about the latest progress in research and new therapeutic options that
are in the pipeline and will seriously improve the approach to PH in some
aspects. How do stakeholders appraise that input into the system?
We want more room into HTA agencies because we are a key element, not
only as target population for health technologies but also as active and
valuable contributors to all aspects of healthcare.
I would also like to draw your attention to new technologies that we
value and we are supporting as patients.
We see that the world is evolving and we want to go along with it. We
are promoting the use of cell phone applications for healthcare. Patients are
monitored on daily basis through the information they provide and healthcare
personnel can obtain valuable data:
Levels of oxygen depending on physical activity,
levels of glucose,
coagulation
rates,
emotional
responses to different stimuli (stress, new medication, psychotherapy…),
pain levels
in chronic pain patients…
There is an enormous amount of information that can be processed to
obtain clinical progress or early warning signs, relieving the system of
unnecessary follow-up visits or “too late interventions” that increase the cost
of healthcare.
