Patients and access to medicines. Pricing and HTA.

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.

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[1] See http://hipertensionpulmonar.es/contenidos/publicaciones/BoletinN1.pdf

Patients' perception on generics

Generics and biosimilars: view of the patient

• The saving policies of National Health Systems

I wanted to start by the saving policies of National health systems because they are your main payor. I would like to stress the word payor, because patients are still the actual consumers of medicines and your final clients.

Crisis is the new trending topic of our governments to justify the trimming of expenditures in all aspects. As we know, at least in Spain, some of the regional governments take over two years to pay for the most expensive drugs that are given at the public hospitals. We have also seen during 2011 the entry into force of a Royal Decree that forces physicians to prescribe the active ingredient, instead of making prescriptions with mention of the brand.

It is quite impressive to observe as patients that the pharma industry is still divided in spite of the difficulties that the sector has to face. There is no doubt that the generics industry is the one experiencing the biggest growth in the short term but it would be short sighted to believe that the authorities will not try and press harder. We already have the example in Andalusia, Southern Spain.

The Andalusian Parliament has recently voted that the companies have to present their products in tender where the one with the lowest prices will get the market. In this way, the authorities respond to the questions raised by pharmacists and healthcare personnel who complained that the prescription by active ingredient provokes that patients receive the drug with a different name and presentation each time, which is a problem specially for the elderly who do not recognize anymore what medicines they are taking. Secondly, the authorities make further cuts in the budget because they will get at a discount what was already cheap.

We fear as patients that the race to get the market is clouding the views of the industry as a whole. We don’t see producers of generics and the big pharma brands sitting down to talk about the loss of income as a common problem and think about a common strategy to try and save part of the gains in the medicines market affected by reimbursement policies.

What we see is retaliation by individual companies. A very big company withdrew from the Greek market, another important one dismissed employees and reduced production in Spain so that they would not only reduce their own expenditures but cause financial loss to the Government because over two hundred workers stopped paying taxes and started receiving the payment for unemployment, also the production decrease means a decrease in taxes that feed the expending capacity of the country.

Many of us do not understand how our political leaders and those behind them believe that reducing the money circulating in the market will actually increase the production of wealth. But we keep praying that those brilliant minds that brought our economy to the present crisis will not suffocate the hen of the golden eggs (I mean the average citizen) to death.

I understand that the large picture would be a whole new and never ending subject. I just want to mention that the financial annihilation of the tax payer, who shapes the mass of the consumers, and is the one that supports the real economy, is not the best policy for the Governments or the private companies even if we are not relevant for the financial markets that rule the world.

Having made the political statement of the day, I continue with my presentation and return to saving policies of our governments.

Within the scheme of cost reduction of the public healthcare, there is the belief that patients are stupid. Therefore politicians are convinced that instead of increasing the efficiency of the public health services they will solve the problem forcing the citizens to shift to private health providers. This means that there is no reimbursement of medicines and there are several outputs of this policy:

-         Some patients will favor the medicines from the big pharma companies.

-         Most patients will reduce the length of the treatment or will avoid going to the doctor altogether in order to save money, which will have terrible consequences for their own health and will decrease the volume of overall medicine consumption.

Summarizing: the saving policies that seem to benefit the generics industry will harm the generics manufacturers as much as the big companies in the medium and long term.

• The patient as a customer not only as a consumer

Of course there will still be a market for medicines. But it is also time to think of the patient as customers not only as consumers. I suppose that all of you are familiar with the terms e-patient and patient empowerment. Some companies make advertisements about their products because they know that the patient has a choice when it comes to treat some of their problems such as the flu symptoms, articular or joint pain, erectile dysfunction, etc. The big companies also promote their products in medical Congresses and inviting the patients’ associations to their headquarters or manufacture plants.

There is no need to spend millions to promote the knowledge about your product especially when it comes to medicines that treat very specific diseases not as widespread as the flu. We, patients, have more and more access to internet and social networks. We join patients’ organizations, visit their forums or send e-mails to ask questions about medical treatments. Patients have more and more responsibility over the progress of their disease and make more decisions about what treatments they want to take.

The time when patients took their doctor advice and prescription without any question or input on their part is bound to pass. E-patients are growing in numbers and the social network is full of groups to give advice and support.

We have very strict ethical rules when it comes to giving advice or moderating a forum. NEVER GIVE A DIAGNOSE, NEVER PRESCRIBE. But it does not mean that we cannot give our opinion based on experience about safety and efficacy of drugs.

We also have a say when it comes to the survival of our National Health Systems. We understand that a good management of the expenditures contributes to the survival of benefits we obtain from the State when we deal with healthcare and reimbursement.

On the other hand, we also make decisions when we have to buy medicines that are not reimbursed. We take into account the cost, the side effects, the efficacy and most certainly we base our choice on how well we know and how good is the reputation of the manufacturer.

• Perception of the generics. How does the patient perceive the generics manufacturers?

We are no different than doctors and health personnel in general when we judge the origin of the drugs we will put into our bodies. The reputation of the authorities of the countries where the medicines are manufactured counts heavily when we evaluate the drug itself. The lack of adequate pharmacological control, the corruption of customs officials and such factors in countries that are known to export a great number of generics make the customer think twice before they buy a medicine that is not backed by big names of the pharmaceutical world.

http://www.washingtonpost.com/wp-dyn/content/article/2007/06/16/AR2007061601295.html http://www.peoplespharmacy.com/2007/06/26/generic-drugs-f/

The above mentioned elements are the most relevant in the short term and the decision made when we are at a drugstore counter. But patients’ organizations have a larger view and we evaluate as much as the companies the return we get as patients when we make our choices.

The main objectives for patients are to get a cure or to have better quality of life. The way we see the generics manufacturers is that their investment in both objectives is reduced to the minimum or nonexistent. The main return we get as patients from the generics industry is that their lower prices are an incentive for the bigger companies to do research in the pursuit of new innovative products that do comply with our own medium and long term interests.

No doubt we see the advantage of lower prices as well, mainly when there is no reimbursement for the medicines we buy from our own family budget. However, it is not only research and new medicines what we need.

Research on the etiology of the diseases is strongly supported by the pharmaceutical industry. Their findings are key elements for the development of new molecules for new therapeutic targets. Scientific Congresses and support for the patients through projects and programmes implemented by patients’ organizations are also returns we get from the financial gains of pharmaceutical companies.

We seldom see the logo of generics manufacturers as sponsors in those activities that are as important for the patients as the drugs themselves.

In our association, we have never received a request from a generics manufacturer to conduct a study on quality of life, to publish a guide for patients or to donate some money we use to help finance a scientific research and shoulder our own running costs.

Whereas the big pharmaceutical companies charge heavily for their products but they also share part of their profit for our dissemination campaigns and many other activities which show real interest for the patient on their part.

Of course, some of you will be saying that there is no comparison between the gains of a big pharma company and one that produces generics. We see the rotation of your stock and we know what it means. We don’t expect you to invest in patients’ wellbeing as much as the big companies, but we would expect you to look more towards the patients. Maybe you should start thinking of social responsibility as an investment not as expenditure.

We, patients, grow increasingly worried because we are also aware that the growth of the generics in the medicines market is not only pushing the big pharma companies to do better. They are also reducing investments to keep their profits. The number of molecules that are candidate for development is reduced, the financial support for programmes and projects for patients is also trimmed down. However we don’t see compensation for that loss coming from the generics industry.

Furthermore, we see alliances between branded companies and generics manufacturers and we wonder, are branded companies slowly giving up on research to move to the greener pastures of the generics market?

• Backyard made generics a threat for the generics industry

There is also something that you might discover today. We patients look at the generics industry and we think that you don’t want to bother investing in research of a new drug because it is easier and cheaper to wait until the patent of an existing one is expired. We don’t see anything wrong with it because your products still go through a process of authorization and quality control. Besides it is not only your right to make that choice, it should also result in advantages for the patients because those who invest in new products must think harder to come with a better drug and to embark in anything that will give them an edge in the market based on quality, efficacy and proximity to the clients’ needs.

But it seems that there are some who think that they can do better than you in terms of cost savings and they don’t bother to work on a final product. They just put the molecule on the market and we see medicines at public hospitals that do not comply with the due processes of quality control and marketing authorization.

Patients receive capsules with just the name of the active ingredient on the label, there is a leaflet (if ever) that goes with the bottle but it does not say anything about the dosage each capsule contains or what other ingredients are used to manufacture it. The pharmacies of those hospitals go shopping for components and then apply the Ikea concept of lower prices if you do it yourself, believing that because they have their own pharmacists and they are part of the National Health Services they can just ignore the rules and regulations that apply to the generics manufacturers from production to the final consumer.

Those manufacturers of raw materials feel that they have no responsibility on the final product and have started to sell their stock not only to you but to a wider market.

And where is the limit? If a hospital can buy sildenafil and use it to treat pulmonary hypertension, what will prevent the pharmacist in my neighborhood to buy the molecule and prepare their own product for the treatment of erectile dysfunction?

The generics companies that sell their sildenafil products for erectile dysfunction in big quantities to the hospitals, and choose to close their eyes although they know it is being used for pulmonary hypertension, might find themselves seeing the proliferation of what I call backyard generics manufactured by the pharmacists in their own labs. You might witness the birth of a whole new small industry that will eat away your profits because what is good for sildenafil is good for many other molecules.

This quid pro quo scenario is not funny for you and most certainly is not safe for the patients. What happens today with sildenafil might happen tomorrow with any of your products.

If you think that the lack of capacity or will from our governments to put an end to what’s going on at our public hospitals is not your problem and you don’t support patients’ organizations efforts, you might find out that patients’ organizations won’t support your claims when it comes to clearing your name when the existence of fake and illegal drugs affects your reputation. Consumers put all generics manufacturers in the same package regardless whether you comply or not with the legislation. The general public does not make differences between legal generics and fake drugs, they just see “generics” as a threat for their health. You might want to make an effort to support the patients’ educational programmes.

The small pharmacies are losing income by the day with the saving policies of our governments I mentioned at the beginning of my presentation. They are looking for new business opportunities. It is only a matter of time before they shift from distributors to manufacturers if the pharmaceutical industry focuses on the actual crisis by sectors (big pharmaceuticals, generics manufacturers, neighborhood pharmacies).

I insist on my advice. The business paradise of the crisis for some generics manufacturers has a few snakes waiting to strike and some of them are already feasting. Either you consider that the pharmaceutical world is not made of watertight compartments and start worrying about each other in some aspects or you are bound to face serious problems whose real victims are the consumers. 

La caridad bien entendida...

“La caridad bien entendida empieza por uno mismo” reza el dicho. Aunque las necesidades a nivel internacional siguen siendo una prioridad, las organizaciones sin ánimo de lucro cobran un papel cada vez más relevante en España a causa de la crisis. Sin embargo, vemos cómo los recursos disminuyen y cómo algunas organizaciones empiezan a reducir en proyectos y programas a pesar de ser más necesarias y relevantes que nunca.

Muchas organizaciones cumplen un papel sustitutorio del Estado cuando éste no quiere o no puede cumplir con sus obligaciones en terrenos específicos. La gran ventaja de tener una ONL que llene el vacío asistencial es que los recursos que se ponen a disposición de la población no vienen exclusivamente de las arcas públicas. Las cuotas de socios, las actividades de captación de fondos y las donaciones que provienen de empresas o particulares alivian al Estado a nivel financiero.

El papel de las ONL es fundamental, no sólo por su labor de sustitución, sino porque aportan un conocimiento profundo de las necesidades de los colectivos a los que dirigen su atención.

Sin embargo, la proliferación de organizaciones convierte en misión imposible conseguir fondos para mantener la actividad. No se trata de competencia en términos de capacidad y calidad, sino en términos de captación de recursos económicos. El mejor vendedor acapara fondos que serían mejor utilizados por otras organizaciones que tienen un foco más centrado en la actividad.

Los donantes, tanto el Estado como las empresas, fundaciones, bancos, particulares, etc., deberían tener una conciencia mayor de dónde ponen sus recursos. La profesionalización de las ONL es fundamental para conseguir una maximización de los fondos disponibles y un mayor impacto en las mejoras que se quieren obtener para los beneficiarios.

En este sentido, es todavía más angustiosa la situación de las ONL que quieren posicionarse y dar unos servicios de calidad porque nadie quiere pagar sueldos, ni infraestructura, ni formación para aumentar las capacidades institucionales.

En las reuniones y congresos donde nos encontramos regularmente los representantes de organizaciones humanitarias, vemos un porcentaje enorme de “damas de la caridad”. Esa figura maravillosa de señoras que dedicaban y aún dedican parte de su tiempo a labores de beneficencia y que extendieron como seglares las labores de las hijas de la caridad, organización religiosa fundada en el siglo XVII.

Pero por loable que sea su labor desinteresada y su dedicación, no alcanzan a comprender las dimensiones de las necesidades estructurales tanto a nivel organizativo como asistencial. Es imperativo que las ONL tengan profesionales que asesoren, proyecten y ejecuten aportando niveles de formación y experiencia que son imprescindibles para alcanzar los niveles de calidad y eficiencia que se necesitan para mantener esos instrumentos de sustitución.

El Estado debería entender esa necesidad e invertir en la infraestructura y las nóminas de las ONL, así como en el fortalecimiento de sus capacidades institucionales. De este modo, el resto de los donantes pueden estar seguros de que su dinero está siendo bien invertido y que, en efecto, llega íntegro a los beneficiarios.

Pero las necesidades de imagen del Estado y de las administraciones regionales y locales llevan a una administración de los recursos deficiente y al descalabro de la acción humanitaria. El personal mal pagado, la falta de formación y la falta de transparencia de las ONL son lacras para el bienestar social que podría tener el país con una visión más dirigida a la eficacia y menos centrada en la publicidad derivada de proyectos asistenciales que se podrían financiar más y mejor con fondos que no provienen del dinero público.

Tal vez los organismos públicos que dedican partidas presupuestarias a las ONL, deberían pensar que se hacen un favor mejorando las capacidades de estas últimas y que "la caridad" que despliega el Estado financiando proyectos en muchas ocasiones ridículos podría invertirse en mejorar las capacidades de los receptores/gestores de esos fondos para que revierta en una mejora de su capacidad asistencial tanto fuera como (ahora con más razón) dentro de nuestras fronteras.

Ajustes presupuestarios como solución a la crisis

Cuanto más leo sobre la insostenibilidad del sistema de salud español, más se me abren los ojos ante la falacia de ciertos argumentos.

“El gasto en salud representa más del 9% del PIB español” dice Francisco Longo en su artículo El sistema público de salud ante cambios profundos y procede a justificar los recortes presupuestarios y fuentes de financiación adicionales a través de la imposición de cobro de servicios públicos.

Para mí, la pregunta fundamental es la siguiente: ¿El porcentaje de gasto en salud es tan alto porque gastamos demasiado o porque el PIB es muy bajo?

¿Cuándo va a salir algún economista que nos explique cómo el incremento de la producción, el aumento del poder adquisitivo del ciudadano de a pie y la eliminación del dinero negro aumentarían el PIB con lo que el porcentaje de gasto en salud se convertiría en algo perfectamente asumible e incluso resultaría barato?

Por supuesto que hay mejoras que se deben hacer. El sistema perfecto no existe. Pero me parece inadmisible que se haga una política de recortes sanitarios y de contracción de las economías domésticas cuando se tendría que hacer una política de incrementar la capacidad de consumo de la gran masa de ciudadanos que son los que sostienen la economía.

En vez de recortar los sueldos y fomentar la precariedad del puesto de trabajo a través de políticas tendentes al despido libre y gratuito, se debería buscar la forma de fomento de la productividad a través de un sistema de incentivos que estuvieran dentro de la nómina y, de ese modo, se pudieran gravar con los impuestos existentes en vez de crear impuestos nuevos o más altos para ingresos cada vez más exiguos.

Se debería acabar con todo ese movimiento de dinero que sólo sirve para disminuir el pago de impuestos y que tiene la forma de cheques de comida y otras “prebendas” que, en realidad, son pan para hoy y hambre para mañana en lo que al trabajador se refiere.

Disminuir en 600 millones la inversión en investigación es disminuir la capacidad que tienen los investigadores españoles de acceder a las ayudas europeas de la estrategia Europa 2020 (heredera de la fracasada Estrategia de Lisboa). Esos fondos europeos están destinados a crear empleo a través del crecimiento y el aumento de la capacidad tecnológica. Y uno se pregunta: ¿para qué quiero invertir en conseguir posicionar los avances españoles dentro de 10 años cuando puedo “ahorrarme” 600 millones de forma inmediata? ¡Pues porque esos 600 millones son dinero que se mueve dentro de nuestra economía, no se desmaterializa en las probetas! Porque están sacando 600 millones de euros de la circulación y creando la caída de muchos millones más porque habrá estructuras costosas infrautilizadas, científicos que cobrarán el paro y cientos de puestos indirectos de trabajo que van a pagar las consecuencias.

¿Pero en qué universidades han estudiado esos economistas fantásticos que ven en la destrucción del estado de bienestar y en esquilmar los recursos económicos de las economías familiares la solución para la crisis creada por la banca y los mercados financieros?

Seré un ignorante en materia económica, pero la “cuenta de la vieja” es bastante segura. Si le quitas a la gran masa de la población los recursos de que dispone, te va a dar igual avalar a los bancos por  100.000 millones porque cada día seguirá aumentando el número de personas que no podrán pagar ni sus hipotecas ni sus créditos y las cuentas corrientes de los pequeños ahorradores se irán adelgazando hasta desaparecer.

El único párrafo del artículo de Francisco Longo con el que no me metería hasta la saciedad es el último y lo respaldo con las reservas propias al miedo a lo que pueda esconder:

“Hacer sostenible el sistema obliga, además, a invertir en gestión. Habrá que conseguir mejoras contundentes de eficiencia y productividad, implantar una firme disciplina presupuestaria y asumir una estrategia de cambio de modelo, en la que las orientaciones del gasto público apuntan a: a) un mayor peso de las políticas preventivas y de salud pública; b) un incremento del peso de la atención primaria y la medicina generalista como puertas de entrada al sistema; c) una atención prevalente al tratamiento de las enfermedades crónicas y la calidad de vida de la población; d) el uso creciente de la colaboración público-privada; y e) políticas que estimulen la responsabilidad de los ciudadanos sobre su salud.”

Una pequeña aportación a la sostenibilidad del sistema de salud

Constantemente leo sobre la necesidad de hacer sostenible el  sistema de salud en España. No soy precisamente un gurú de las finanzas. Pero, si algo he aprendido en los últimos años, la economía se llama así porque tanto una casa como un Estado funcionan de la misma forma: el equilibrio entre ingresos y gastos.

Me preocupa que se quiera cobrar un euro por cada receta cuando los que más tendrán que pagar son los pacientes crónicos y los ancianos polimedicados. Sin embargo, continúa la práctica de las facturas sin IVA. Me gustaría que algún economista o alguien del Ministerio de Hacienda nos diera una estimación de ingresos por receta cobrada e ingresos por IVA de facturaciones fraudulentas. ¿Valdría la pena un esfuerzo adicional por parte de ese Ministerio para que no acabemos pagando por receta en todo el territorio nacional?

Me preocupa que se lleve una política de acoso y derribo contra los sueldos del personal de salud y el número de plazas disponibles. ¿Cuál es el ahorro en personal comparado con los ingresos que se producirían en las arcas del Estado si se persiguiera a las empresas que contratan trabajadores pero no los dan de alta para no pagar impuestos? ¿Cuánto perdemos los españoles al no ingresar en concepto de IRPF y Seguridad Social por los complementos que no forman parte del sueldo base de las nóminas?

Me preocupa que se quiera penalizar a las personas que “abusan” de los servicios de salud en atención primaria y los servicios de urgencias. Lo que se debería hacer es que esas personas sean identificadas y se solvente el problema de base que les lleva a abusar (problemas psicológicos, desconocimiento del sistema de salud, listas de espera eternas…). Sin embargo, eso se considera un gasto adicional injustificable en tiempos de crisis como el que vivimos. ¿No se podría cubrir esa inversión (que no gasto) con los ingresos que se pierden gracias a las facturas falsas que se declaran para que las empresas se desgraven un IVA que no han pagado?

Me preocupa que se produzcan abusos y se fabriquen genéricos sin autorización en algunos hospitales públicos. El ahorro que esos genéricos puede llegar a producir, ¿no podría ser compensado con impedir que algunas personas cobren el paro y desempeñen simultáneamente un trabajo por el que cobran sin cotizar? ¿Cuántos otros subsidios y subvenciones se cobran sin que realmente se tenga derecho?

Me preocupa que se cierren camas en los hospitales y que, sin embargo, se permita que sigan existiendo empresas tapadera para absorber los beneficios de otra empresa que no es deficitaria.

Me preocupa que se tarde en pagar a los farmacéuticos por los medicamentos que tomamos porque los necesitamos para tener calidad y esperanza de vida mientras se dejan de descubrir los millones que se ocultan en paraísos fiscales.

Me preocupa que se deje de invertir en investigación y que se siga sin cobrar impuestos por ocultación de patrimonio.

Me preocupa que se acabe la lista de problemas de nuestro supuestamente insostenible sistema de salud y que la lista de delitos fiscales que siguen quedando impunes se alargue indefinidamente.

Evaluación de Tecnologías Sanitarias, ¿qué le importa a los pacientes?

El primer paso para responder a la pregunta del título es entender qué es la Evaluación de Tecnologías Sanitarias (ETS). En realidad, como pacientes, sabemos muy poco acerca de todos los procesos que terminan haciendo que los tratamientos farmacológicos estén disponibles en nuestro país. 

Aunque es importante saber cómo la investigación de una molécula termina por convertirse en un medicamento que cambia nuestra esperanza o nuestra calidad de vida, este conocimiento  no supone una gran diferencia si el nuevo tratamiento no está previsto en el sistema de salud nacional.

A pesar de que las tecnologías de salud no sean necesariamente un medicamento, es un concepto fácil de entender y lo vamos a utilizar más a menudo en este documento. Pero en beneficio de la claridad, hemos de subrayar que las tecnologías de la salud pueden ir desde los cuidados preventivos (campañas de vacunación o cribado preimplantacional de mutaciones genéticas) hasta el uso de helicópteros para transporte de órganos para trasplante.

El proceso de ETS se refiere a la evaluación económica de la forma en que un nuevo medicamento cambia la vida del paciente. Por ejemplo, los precios de los medicamentos nuevos y / o cómo el nuevo medicamento tiene un valor añadido para el paciente, sus cuidadores y la sociedad va a determinar si la autorización de comercialización que reciben en la Agencia Europea del Medicamento (EMA) se aplica a nivel nacional.

¿Cuál es el costo de un tratamiento y vale la pena para un país pagar por él? La evaluación del impacto en los niveles médico, social, económico y ético que una nueva tecnología de salud produce son los elementos clave que determinan la toma de decisiones. En muchos países, tenemos la política de "todo para el paciente pero sin el paciente" y los pacientes no estamos invitados a dar una aportación en el proceso de evaluación de una tecnología de salud. La formación del paciente sobre cómo funciona la ETS permitirá a sus representantes defender mejor sus intereses cuando se trata de la introducción, el rechazo de reembolso o la aplicación de las nuevas tecnologías por las autoridades sanitarias.

Los pacientes tenemos la tendencia a utilizar las emociones para defender nuestro derecho a acceder a una nueva tecnología (con el propósito de este artículo vamos a considerar como "nueva" cualquier tecnología de la salud que no está disponible en nuestro sistema de salud sin tener en cuenta la antigüedad del fármaco, dispositivo o el procedimiento). Sin embargo, las emociones cuentan muy poco y tenemos que proporcionar datos basados ​​en la evidencia si queremos ser escuchados por quienes toman las decisiones.

La aprobación para el uso humano se basa en la seguridad y la eficacia de la tecnología. La ETS se refiere a aspectos económicos. Economía significa muchas cosas cuando hablamos de ETS, no sólo el coste financiero. Se plantean preguntas del tipo "¿La nueva tecnología reduce las visitas al hospital para el paciente? ¿Permite que el cuidador tenga tiempo de adicional para tener una vida profesional o personal y retrasar o evitar el burn-out?"

Estas dos preguntas son un buen ejemplo, ya que implican diferentes elementos para tomar en cuenta. Imaginemos que la nueva tecnología produce una reducción del número de visitas al hospital para un paciente que todavía puede trabajar (evidentemente se trata de un caso hipotético con parámetros ideales no sujetos a debate):

·         En primer lugar, esto significa un menor coste para el sistema de salud.

o    Si una simple consulta en el hospital cuesta un promedio de 100 € y la atención a los costos de la sala de emergencia, digamos, 800 € (estas cifras son sólo para dar un ejemplo, no reflejan los cálculos de coste real en España)… sacar conclusiones es un ejercicio simple de matemáticas.

o   La menor utilización de los recursos del hospital por un paciente significa un aumento en el número de pacientes que pueden beneficiarse de los servicios del mismo, por lo tanto hay necesidad de menos hospitales para un determinado número de habitantes.

·         También puede establecer la diferencia entre el empleo y el desempleo.

o   El absentismo laboral puede ser una razón para despedir  a una persona de la empresa donde trabaja.

o   Mantener la mente del paciente despreocupada por el próximo seguimiento médico aumentará la productividad.

o   Mantener su puesto de trabajo producirá ingresos fiscales para el gobierno.

·    Y no hay que olvidar el incremento en la capacidad del paciente para disfrutar de la vida y mejorar las vidas de aquellos que están a su alrededor (el cuidado de los niños, eliminar la carga que supone para el cuidador por tener una actitud mental más feliz y más sana ...). Aunque este último parece un parámetro subjetivo, es cuantificable y válido como argumento económico.

Y así sucesivamente...

Nadie más que los propios pacientes sabe lo que significa una mejor calidad y esperanza de vida. Los pacientes pueden presentar pruebas basadas en la evidencia o razonamientos que influyan en la opinión pública o en el juicio de los responsables de políticas de salud.

La comprensión de la Evaluación de las Tecnologías de Salud faculta a los pacientes y las organizaciones de pacientes a intervenir en el proceso de hacer que una nueva tecnología esté disponible en su país. A ambos, pacientes y organizaciones, nos concierne la ETS, sus mecanismos y sus procedimientos, ya que somos los beneficiarios directos de la implantación a nivel nacional de las nuevas tecnologías.