Category Archives: Disease and Treatment

How to Prevent HIV/AIDS?

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The world’s leading public health challenge is the HIV virus that leads to AIDS. In 2018, around 37.9 million people were infected with HIV/AIDS and approximately 1.7 million more joined the club worldwide. Only 79% of the affected numbers were aware of their HIV status and the remaining 21% did not even have access to HIV testing services. The death rate associated with AIDS has reduced from 1.7 million in 2004 to 770,000 in 2018 [1,2,3].

A brief summary on the HIV epidemic is presented in the Figure 1 [2]

Figure 1: Global HIV Epidemic [2]

Despite the advances in our healthcare sector and availability of a wide range of effective prevention tools, a large number of individuals with HIV or at risk of HIV do not have access to the prevention, care, and treatment [1]. A study reported that majority of the current HIV transmission is done via people who inject drugs, occurring in the majority of low and middle-income countries [4].

The advances in science have provided many tools to prevent HIV these days. However, to protect oneself from a disease one should be aware about the cause of the disease, with an understanding of how the virus spreads. HIV virus can be passed in the following ways [5]:

  • Having sexual intercourse with an HIV infected person
  • By sharing contaminated needles such as through blood transfusion or drug use
  • From an HIV infected mother to the foetus during pregnancy, or through breast feeding

Anyone and everyone is vulnerable to the HIV virus, but preventive measures can help one to reduce the risk of getting infected. Key approaches for the prevention of HIV are listed below:

HIV Prevention Medication [6,7]

Pre-exposure prophylaxis (prEP) and post-exposure prophylaxis (PEP) can greatly reduce the risk of contracting the HIV infection. According to the federal guidelines, prEP is considered for HIV-negative or people at a very high risk of HIV. It consists of daily medication and regular visits to a healthcare professional. This includes:

  1. Anyone who is in sexual contact with a HIV positive person
  2. A man who has sex with both women and men
  3. A heterosexual man or woman who have had sexual intercourse with partners of unknown HIV status.

PEP can prevent you from becoming infected with the virus once you are exposed to it. For this medication to work, it must be started within 72 hours after a possible exposure. It should be taken once or twice daily for 28 days. Use of condoms and safe injection practices is recommended during the medication.

An HIV-negative person has the following ways to protect himself/herself from getting infected:

Figure 2: Steps of Prevention for HIV-negative person

Treatment as Prevention [7]

This refers to the use of HIV medication to prevent transmission of the infection to others. An HIV infected person taking the medications as prescribed and has regular follow-ups to keep an undetectable viral load are at no risk of transmitting HIV to their HIV-negative partners. Antiretroviral therapy (ART) to suppress the virus should be taken regularly as it prevents the virus from growing in our body that keeps us healthy and prevents illness. Women infected with the virus are recommended to take the treatment to minimize the risk of transmission to the foetus during pregnancy or delivery. After conception, the new-born receives HIV medications for 4 to 6 weeks. Figure 2 shows the actions to be taken to prevent HIV from passing to others.

Figure 3: Steps for Prevention for HIV-positive person

The United Nations organized the Joint United Nations Programme on HIV/AIDS (UNAIDS) with an ambitious target to treat HIV with a 90-90-90 goal. By 2020, 90% of the people living with HIV will be aware of their HIV Status. 90% of the people diagnosed with HIV will receive a proper antiretroviral therapy (ART). 90% of people on ART will have viral suppression [1,7].

Turacoz Healthcare Solutions aims to spread awareness about HIV/AIDS. We urge the people to be aware about the condition. Following the preventive measures and seeking counseling is the best way to avoid this condition. However, for the HIV infected individuals it is best to continue with the ART and maintain a healthy diet. Nevertheless, with love and support from family and friends they can lead a happy and long life.

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References

  1. Retrieved from: https://www.hiv.gov/hiv-basics/overview/data-and-trends/global-statistics [Accessed on 26th December 2019]
  2. Retrieved from: https://www.who.int/hiv/data/en/ [Accessed on 26th December 2019]
  3. Retrieved from: https://www.unaids.org/en [Accessed on 26th December 2019]
  4. Mathers BM, Degenhardt L, Phillips B, Wiessing L, Hickman M, Strathdee SA, Wodak A, Panda S, Tyndall M, Toufik A, Mattick RP. Global epidemiology of injecting drug use and HIV among people who inject drugs: a systematic review. The Lancet. 2008 Nov 15;372(9651):1733-45
  5. Retrieved from: https://stanfordhealthcare.org/medical-conditions/sexual-and-reproductive-health/hiv-aids/treatments/prevention.html [Accessed on 26th December 2019]
  6. Retrieved from: https://www.cdc.gov/hiv/basics/prevention.html [Accessed on 27th December 2019]
  7. Retrieved from: https://www.hiv.gov/hiv-basics/hiv-prevention/reducing-sexual-risk/preventing-sexual-transmission-of-hiv [Accessed on 27th December 2019]
  8. Retrieved from: https://www.unaids.org/en/resources/909090 [Accessed on 26th December 2019]
  9. Retrieved from: https://www.hiv.gov/hiv-basics/hiv-prevention/using-hiv-medication-to-reduce-risk/hiv-treatment-as-prevention [Accessed on 27th December 2019]

Medical Writing for Disease Management Platforms

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Disease management programs (DMPs) are defined as “structured treatment plans that aim to help people manage their chronic disease in a better way and to maintain as well as improve quality of life”. The main components of disease management programs are mentioned in Figure 1.

Figure 1: Components of Disease Management Software

By application, the care management solution is classified into chronic care management, disease management and utilization management.

Disease Management Software’s

According to Markets and Markets™ report, the disease management software market is expected to reach USD 37.94 billion by 2027 from USD 14.12 billion in 2019. This may be attributed to the rising geriatric population and burden of chronic diseases.

The disease management software is used to manage, monitor, and process patient data by connecting to electronic health record (EHR) and other healthcare data sources. It aims to reduce healthcare costs and promote government initiatives to assist patient-centric care. The high growth in this segment can be attributed to the ability of these solutions to reduce the cost of care with the help of protocol management and prevent episodes of ill health through comprehensive health management.

To be included in Disease Management Software category, a product must have the following characteristics as mentioned in Figure 2.

Figure 2: Characteristics of Disease Management Software

Some of the examples of disease management software are mentioned in Figure 3.

Figure 3: Examples of Disease Management Software

Mobile Health Apps for Disease Management

Due to widespread use of smart phones and tablet computers, disease management via mobile health apps is easy and is expanding rapidly. Around 3.7 billion apps were downloaded in 2017 and is expected to grow by 16% within the next year. Many apps are available in play store and iTunes for clinical disease management and patient self-management of conditions including asthma, diabetes, heart disease, cancer, and even autism and insomnia. These apps help both doctors and patients as money can be saved by patients and doctors can save on labour force. Some of the apps for chronic disease management are mentioned in Figure 4.

Figure 4: Examples of Disease Management Applications

Poor Usage of Disease Management Software’s and Mobile Apps

One of the reasons why the healthcare apps or software’s fail is because of the lack of understanding about the healthcare apps. Most of the health care apps get uninstalled either due to the highly scientific content which is difficult for the laymen to understand. Apps with very basic scientific content also fail to impress the audience. Therefore, it essential to involve a medical writer who has a scientific background and knows the subject comprehensively. The content for such software’s or apps must be developed based on patient’s requirement, target audience and should be specific to a region.

Role of Medical writing in Developing Health Related Software’s and Mobile Apps

According to Grand View Research, global medical writing industry is expected to reach USD 3.75 billion by 2026. Medical writers are involved in analysis and reporting of retrospective and prospective clinical trials, research methods (descriptive and predictive), health economics, and evaluation of disease management initiatives. Medical writers also play a key role in developing applications for mobile devices that are used in multiple ways, such as:

  • Disease management
  • Continuing education and training
  • Medical reference and information-gathering
  • Practice management and monitoring

The medical writer creates informational or instructional materials for use in health or medical context. These materials allow different audiences to understand health and medical situations or practices, perform certain health or medical-related activities, or use a health/ medical product/ mobile health apps or device. Medical writers must have the following skills to develop medical content:

  • They must possess medical and therapeutic knowledge, and must have understanding about the recent regulations and technical guidelines
  • They must have mastery in language and grammar, proof reading and editing skills, ethical and legal issues related to writing
  • They must have creative writing skills to articulate the scientific information in clear and approachable language
  • As scientific writers are involved in creating content for mobile medical apps and other disease management software’s, it is essential for them to possess instructional designing skills

Writer Groups Initiative in Developing Disease Management Programs

The heterogeneity of disease management programs has made it difficult to compare and evaluate different programs. The American Heart Association’s Disease Management Taxonomy Writing Group developed a taxonomy or system of classification to classify and compare different disease management programs and to inform efforts to identify specific factors associated with effectiveness.

The writers did a MEDLINE (Medical Literature Analysis and Retrieval System Online) search on the terms heart failure, diabetes, and depression, together with disease management, case management, and care management. English articles published between the time period 1987 and 2005 were considered for the program. The following studies were considered:

  • Interventions designed to improve outcomes and/or reduce medical resource utilization in patients with,
  1. Heart failure
  2. Diabetes
  3. Depression
  • Clearly defined protocols with at least two prespecified components traditionally associated with disease management

A taxonomy was developed by the writer’s group with eight domains. A graphic representation of the taxonomic structure and subdomains are found in the Figure 5.

Figure 5: Taxonomic Structure and Subdomains

Turacoz Healthcare Solutions understands its professional responsibility and takes an initiative to make authors and medical writers aware about their role in developing disease management programs. Turacoz is a medical communication company that provides scientific/medical writing support to the industry and academicians.

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‘World No Tobacco Day’ (31st May 2018): Tobacco and Heart Disease.

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World No Tobacco Day (WNTD) is celebrated every year on 31st May, since its beginning in 1988. The main aim to mark this day is to encourage a 24-hour period of abstinence from all forms of tobacco consumption around the world. It also aims to spread awareness about the widespread prevalence of tobacco use and the health risks associated with tobacco consumption. The resolution to celebrate 31 May as WNTD was passed by the World Health Assembly (WHA) in 1998 (WHA40.38). The World Health Organization (WHO) has continuously supported WNTD, every year for this campaign and decides on a theme for the day to create a more unified global message. The global theme for WNTD 2018 is – “Tobacco and Heart disease”. The theme focuses on the association between tobacco consumption and cardiovascular health and aims to inculcate the sense of refraining from tobacco use among general people.

Tobacco contains nicotine, a drug classified as potent parasympathomimetic stimulant. Nicotine is a poisonous alkaloid of the plant genus Nicotiana (family Solanaceae). The WHO declared tobacco as the world’s single greatest preventable cause of death in 2008.

Tobacco use is an important risk factor for the development of various diseases such as cancers (lung, blood, kidney, bladder, brain etc.), respiratory diseases, cardiovascular diseases (CVDs), coronary heart disease (CHD), stroke, peripheral vascular disease, pregnancy complications etc.

Key Facts from 2017 World Tobacco Reports

  • Worldwide, each year tobacco causes nearly 6 million deaths, and current trends show that tobacco use lead to more than 8 million deaths annually by 2030.
  • Almost every child regularly breathe air polluted by tobacco smoke in public places.
  • As per the WHO’s, Global Health Observatory (GHO) data 2016, 40% of children are exposed to second-hand tobacco smoke, accounting for over 600,000 deaths per year. Close to a third of those deaths were reported in children under the age of five and two-thirds were in Sub-Saharan Africa (SSA) and South Asia.
  • In 2011, tobacco caused one-tenth of CVDs worldwide. About 12% of all heart disease deaths are due to the use of tobacco and second-hand smoke.
  • After high blood pressure, tobacco use is the second leading cause of CVD.

Aim of the World No Tobacco Day 2018

  • Highlighting the connection between the use of tobacco products and CVDs.
  • Increasing awareness within the masses to refrain from tobacco use and resist exposure to second-hand smoke to improve their cardiovascular health.
  • Promoting heart health by feasible government actions and public measures that can help to reduce the risks to heart health posed by tobacco.
  • Encouraging countries to include tobacco control in their national agenda.

Turacoz healthcare solutions, aims to increase awareness about the negative health impact of tobacco consumption and motivate them to refrain from the use of tobacco products. We must all join hands and raise our voice against both active and passive smoking so that a brighter and healthier future can be ensured for our younger generation and our Nation. Turacoz is a medical communications company, which offers services to healthcare professionals in clinical research, regulatory writing, publication writing, medico-marketing writing, and support for conducting medical advisory board meetings.

Challenges in Rare Disease Research: The Role of Advocacy Organizations in Overcoming these Challenges

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What is a Rare Disease

Rare disease refers to a condition that affects fewer people. The World Health Organization (W.H.O) has defined a rare disease as one with frequency less than 6.5-10 per 10,000 people. Challenges in Rare Diseases Research

Unlike the common disease, research in rare diseases encounters several challenges. They are:

  1. Recruiting, engaging, and retaining patients
  2. Designing and evaluating clinical trials
  3. Lack of funding

It is important to overcome these challenges to develop treatment for rare diseases and provide the affected patients a better quality of life. A boost in the research of rare disease has occurred in last two decades, the credit for this can partly be given to the patient advocacy groups.

Patient Advocacy Groups

Patients advocacy groups (PAGs) refer to the organizations, mostly non-profit, that are often concerned with one specific group of disorders. The history of the development of PAGs for specific disease dates to mid-1930s. Initially, the PAGs role was to provide emotional and social support to the affected patients; however, later they also started initiating and conducting research. As per the estimates, there are more than 1200 patient organizations in the U.S. alone that advocate patients with one or more rare diseases.

PAGs help patients with rare diseases in various ways as listed below:

  • They help patients seeking information on therapeutic options, the latest research, or financial aid resources.
  • They encourage research on the disorder by enrolling patients in studies and being involved in the study design. They may also help to look for volunteers and control subjects, to collect data, and analyze it.
  • They are involved in developing and updating guidelines related to disorders.
  • They provide emotional support to the affected individuals by organizing social events where they can meet other individuals affected with the same disorder.
  • They are involved in initiating and conducting research for new therapies, natural history information, management and care for their disorder.
  • They are involved in creating a registry of individuals affected with a rare disorder or a biobank of specimens.

Thus, the PAGs can help overcome the above-mentioned challenges associated with rare disease research.

A single organization is usually involved in one (or may be 2 to 3) of the above activity. The table below enlists some rare disease organizations that initiated research either with staff scientists of the advocacy groups or in partnerships with scientists from academic institutions or industry (Table 1).

Table 1: Advocacy Organizations and Their Achievements

 

These PAGs are linked to one or more bigger networks. Let us discuss one such bigger network.

Rare Diseases Clinical Research Network and Patient Advocacy Groups

The Rare Diseases Clinical Research Network (RDCRN) group was formed in 2003 by the Office of Rare Diseases Research (ORDR) National Center for Advancing Translational Sciences (NCATS).in collaboration with six other Institutes and Centers (ICs). It funded 10 Rare Diseases Clinical Research Consortia (RDCRC) and a single Data Management and Coordinating Center (DMCC) for the whole Network. Following its expansion in 2014, RDCRN collaborated with ten Institutes and Centers of the National Institute of Health and include 22 consortia and one DMCC. It was announced that these consortiums will collaborate with 98 PAGs as research partners. A recent study by Merkel et al (2016) outlines the roles patients and PAGs play in the RDCRN and reports on the PAGs’ impact on the Network’s success. The activities of PAGs are presented in Figure 1.

RDCRN: Rare Diseases Clinical Research Network; PAG: Patient advocacy group

Figure 1: Activities of patient advocacy groups

Thus, PAGs form a pillar in conducting rare disease research. They can help reach the treatment to millions of individuals with rare diseases worldwide. Turacoz Healthcare Solutions aims to spread awareness about the role of patient advocacy groups in the rare disease research.