(Vatican Radio) The body can work as its own “pharmacy” with its own tool kit to heal itself – that’s one of the revolutionary concepts to come out of a Vatican conference on regenerative medicine and its cultural impact on society.
On day two of the three day conference organized by the Pontifical Council for Culture and the Stem For Life Foundation , researchers from some of the world’s leading cancer institutes presented their ground-breaking technologies in immunotherapy and expressed high hopes that a cure for the all-too-often deadly disease may be just around the corner.
Need for prevention, access and affordability
U.S. Vice President Joe Biden, who lost his son to cancer, addressed participants saying his son’s doctors told him that just in the last 4-5 years, cancer research has reached a turning point and that for the first time in history, many disciplines are working together to bring a cure. Echoing the call of Pope Francis , he said the tens of thousands of cases of cancer need to be prevented, and patients need access to affordable treatment. Fewer than 5% of patients end up in clinical trials.
His voice rising with emotion, he challenged the scientists and doctors to share their research and data with each other: “Why do you wait? Do it now!”
Many of the researchers have begun to do just that thanks to a new approach among donors and philanthropists who are encouraging them to work in teams and share the data they gather. Many, as we heard Friday, are already seeing success with immunotherapy – using the body’s own immune system to attack malignant cells – as well as with stem cells and combined therapies to treat cancer. Work is also underway to create and test personalized, patient-specific vaccines that hold the promise of preventing tumors from ever developing.
Dr. Robin Smith, President of the Stem For Life Foundation, spoke to Vatican Radio’s Tracey McClure about the interest in the Vatican meeting…
Listen:
“Really it’s important for us to search for the cures and help bring solutions to people who are suffering around the world and we’re starting to see everyone really focusing on that,” says Smith.
Over the last five years, results in cancer trials have been “amazing”
“Immunotherapy, the way that you can take your immune system and educate it to kill cancer cells or to stop being over-active and killing good tissue” are just some of the exciting advances to come to the fore, Smith explains. “We are learning more about how our body acts and we are learning more how we are able to really use what we have, what God has given us, to influence our health and cells that are damaged along the way.”
A cure for cancer is on the way, need for speedy regulatory approval
“A cure is on the way,” says Smith. “More effective therapies – not just treating symptoms but actually treating the underlying cause of their disease – is underway. It’s just a matter of time and we have to band together to get the regulatory bodies focused on getting these therapies approved and into the clinic and to the patients who need them.
Some countries, like Japan, have been able to speed up the regulatory process .
“They’ve changed some legislation – if they know [the therapy] is safe and it shows a sign of efficacy – to allow patients to get the therapy while it continues along the development program for final approval.” “So we all need to take a look at that and figure out how to make [the process] quicker. Maybe [the answer is] it’s not as many patients because these trials are so costly.” Development can take up to 10-15 years and costs can be upwards of US$ 500 million. “And for people who are sick and suffering through their lifetime, that’s too long.”
Pope Francis’ words to participants , Smith says, offered a very “consistent” message.
“It’s the Year of Mercy, he’s focused on helping people, people’s needs, the focus on children, and you know, the fact that you have rare diseases that affect very few people – people aren’t focused on this. It’s not economically feasible to come up with the therapies to treat those diseases as they take so long and cost so much. So from a corporation point of view, it’s very difficult. And [the Pope’s] point is that we need to focus: someone needs to get out there and realize that there are many millions of people with rare diseases and we have to look for solutions and people aren’t doing that right now and he wants the world to come together and focus on those people who need advocates and who need people to really push on their behalf.”
To find out more about the conference:
#unitetocure and go to the website http://www.stemforlifefoundation.com/
Newsletter: https://www.stemforlife.org/wp-content/uploads/2012/11/SFL_Newsletter_FALL12.pdf
(from Vatican Radio)…
(Vatican Radio) Pope Francis warned Christians against having double lives, displaying an outer facade of light but having darkness in their hearts. He urged them to walk in the light and not tread dark paths, saying God’s truth cannot be found there. The Pope’s remarks came during his homily at Mass celebrated on Friday morning in the Santa Marta residence.
Taking his cue from the reading of St John’s First Letter, Pope Francis reflected on the eternal struggle against sin, saying we must be pure like the Father but even if we sin we can count on his pardon and his tenderness. He stressed the Apostle’s warning to believers to tell the truth and not have double lives, saying one thing but doing another.
Walk in the light
“If you say you are in communion with the Lord, then walk in the light. But no to double lives! Not that! That lie that we are so used to seeing and where we too sometimes fall (into temptation), don’t we? To say one thing and do another, right? It’s the never ending temptation. And we know where that lie comes from: in the Bible, Jesus calls the devil ‘the father of lies’, the liar. It’s for this reason that this grandfather says with infinite tenderness and meekness to the ‘adolescent’ Church: ‘Don’t be a liar! You are in communion with God, walk in the light. Do works of light, don’t say one thing and do another. No to double lives and all that.”
Bigger than our sins
Noting how John began his Letter with the greeting, ‘children’, Pope Francis said this affectionate beginning is just like the tone of a grandfather towards his ‘young grandchildren’ and reveals the tenderness and light contained in this reading. It also recalls Jesus’ words when he promised “rest” to all those “who labour and are overburdened.” In the same way, the Pope continued, John urges his readers not to sin but if somebody does, to not be discouraged by this.
“We have a Paraclete, a word, an advocate, a defender at the Father’s side, it’s Jesus Christ, the Upright One. He makes us righteous. It is He who pardons us. A person may feel like saying to this grandfather who gives us this advice: ‘But is it such a bad thing to have sins?’ ‘No, a sin is a bad thing! But if you have sinned, look at who is waiting to pardon you.’ Always! That’s because He, our Lord, is greater than our sins.”
The Pope concluding by saying this is God’s Mercy and his greatness and it’s from Him alone that we can get our strength.
“We must walk in the light because God is Light. Don’t walk with one foot in the light and the other in darkness. Do not be liars. And one other thing: we have all sinned. Nobody can say: ‘This man is a sinner, this woman is a sinner.’ I, thanks to God, am upright.’ No, only one is Upright, He who paid for us. And if somebody sins, He is waiting for us and pardons us because He is merciful and knows very well what we are shaped from and remembers that we are but dust. May the joy that this Letter gives us, carry us forward in the simplicity and the transparency of the Christian life, above all when we turn to the Lord… with truth.”
(from Vatican Radio)…
(Vatican Radio) Pope Francis on Friday addressed participants of an International Conference on the Progress of Regenerative Medicine and its Cultural Impact. The Conference is being sponsored by the Pontifical Council for Culture, the Stem for Life Foundation, and the STOQ Foundation.
The 2016 conference focused on pediatric cancers and rare diseases, as well as diseases that occur with aging. It featured talks and discussions with leading cell therapy scientists, physicians, patient advocates, ethicists, philanthropists, leaders of faith and government officials.
In his address, Pope Francis focused on three aspects of the commitment of the Pontifical Council for Culture, and the institutions working with it.
“It is fundamentally important that we promote greater empathy in society,” the Pope said, “and not remain indifferent to our neighbour’s cry for help, including when he or she is suffering from a rare disease.” Pope Francis described this aspect of their work as “increasing sensitivity.”
The Holy Father also emphasized the importance of research, in terms of “education and genuine scientific study.” Education, he said, is necessary not only to develop students’ intellectual abilities, but also to ensure “human formation and a professionalism of the highest degree.” Research, meanwhile, “requires unwavering attention to moral issues if it is to be an instrument which safeguards human life and the dignity of the person.”
The third aspect highlighted by Pope Francis was “ensuring access to care.” A desire for profit should never prevail over the value of human life. This, the Pope said, “is why the globalization of indifference must be countered by the globalization of empathy.” By drawing attention to and educating people about rare diseases, by increasing funds for research, and by promoting “necessary legislation as well as an economic paradigm shift,” he continued, “the centrality of the human person will be rediscovered.”
Pope Francis concluded his address with a word of encouragement for those participating in the Conference. “During this Jubilee Year, may you be capable and generous co-operators with the Father’s mercy.”
Below, please find the full prepared text of Pope Francis’ remarks:
Address of His Holiness Pope Francis
to Participants of the International Conference
on the Progress of Regenerative Medicine and its Cultural Impact
Paul VI Audience Hall, Vatican City
Friday 29 April 2016
Dear Friends,
I am pleased to welcome all of you. I thank Cardinal Gianfranco Ravasi for his words and, above all, for having organized this meeting on the challenging problem of rare diseases within today’s social and cultural context. During your discussions, you have offered your professionalism and high-level expertise in the area of researching new treatments. At the same time, you have not ignored ethical, anthropological, social and cultural questions, as well as the complex problem of access to care for those afflicted by rare conditions. These patients are often not given sufficient attention, because investing in them is not expected to produce substantial economic returns. In my ministry I frequently meet people affected by so called “rare” diseases. These illnesses affect millions of people throughout the world, and cause suffering and anxiety for all those who care for them, starting with family members.
Your meeting takes on greater significance in the Extraordinary Jubilee Year of Mercy; mercy is “the fundamental law that dwells in the heart of every person who looks sincerely into the eyes of his brothers and sisters on the path of life” ( Misericordiae Vultus , 2). Your work is a sign of hope, as it brings together people and institutions from diverse cultures, societies and religions, all united in their deep concern for the sick.
I wish to reflect, albeit briefly, on three aspects of the commitment of the Pontifical Council for Culture and institutions working with it: the Vatican Science and Faith Foundation–STOQ, the Stem for Life Foundation, and many others who are cooperating in this cultural initiative.
The first is “increasing sensitivity”. It is fundamentally important that we promote greater empathy in society, and not remain indifferent to our neighbour’s cry for help, including when he or she is suffering from a rare disease. We know that we cannot always find fast cures to complex illnesses, but we can be prompt in caring for these persons, who often feel abandoned and ignored. We should be sensitive towards all, regardless of religious belief, social standing or culture.
The second aspect that guides your efforts is “research”, seen in two inseparable actions: education and genuine scientific study. Today more than ever we see the urgent need for an education that not only develops students’ intellectual abilities, but also ensures integral human formation and a professionalism of the highest degree. From this pedagogical perspective, it is necessary in medical and life sciences to offer interdisciplinary courses which provide ample room for a human formation supported by ethical criteria. Research, whether in academia or industry, requires unwavering attention to moral issues if it is to be an instrument which safeguards human life and the dignity of the person. Formation and research, therefore, aspire to serve higher values, such as solidarity, generosity, magnanimity, sharing of knowledge, respect for human life, and fraternal and selfless love.
The third aspect I wish to mention is “ensuring access to care”. In my Apostolic Exhortation Evangelii Gaudium I highlighted the value of human progress today, citing “areas such as health care, education and communications” (52). I also strongly emphasized, however, the need to oppose “an economy of exclusion and inequality” (53) that victimizes people when the mechanism of profit prevails over the value of human life. This is why the globalization of indifference must be countered by the globalization of empathy. We are called to make known throughout the world the issue of rare diseases, to invest in appropriate education, to increase funds for research, and to promote necessary legislation as well as an economic paradigm shift. In this way, the centrality of the human person will be rediscovered. Thanks to coordinated efforts at various levels and in different sectors, it is becoming possible not only to find solutions to the sufferings which afflict our sick brothers and sisters, but also to secure access to care for them.
I encourage you to nurture these values which are already a part of your academic and cultural programme, begun some years ago. So too I urge you to continue to integrate more people and institutions throughout the world into your work. During this Jubilee Year, may you be capable and generous co-operators with the Father’s mercy. I accompany you and bless you on this journey; and I ask you, please, pray for me. Thank you.
(from Vatican Radio)…
The Annuario 2016 and the Annuarium Statisticum Ecclesiae 2014 ,
edited by the Central Statistics Office, is has become available in
book stores. Both volumes are printed by the Vatican Printing Press.
The data reveal several new aspects that emerged
between 15 February and 31 December 2015 in the life of the Catholic
Church in the world. During that period one eparchy was elevated to
metropolitan status, three new dioceses, three eparchies and two
apostolic exarchates were created, and one apostolic exarchate was
elevated to eparchy.
The statistics presented in the
Annuarium Statisticum ,
relevant to the year 2014, provide a brief analysis of the chief
dynamics regarding the Catholic Church in the 2,998 ecclesiastic
circumscriptions throughout the world.
Over the past nine years the number of baptized
Catholics worldwide grew by 14.1%, exceeding the growth rate of the
world’s population for the same period (10.8%). The presence of
Catholics in the world, therefore, increased to 17.8% in 2014, from
17.3% in 2005. In absolute terms this amounts to approximately 1.272
billion Catholics in 2014 as compared to 1.115 billion in 2005. Since
the statistics varied considerably in the various geographical areas,
this explains the heterogeneous overall figure.
While Europe hosted nearly 23% of the world’s
Catholic community in 2014, it now appears to be the least dynamic area
overall, with an increase in the number of Catholics for the entire
period of only slightly over 2%. The Catholic presence in the territory
remained fixed at roughly 40%, with a minor correction with respect to
2005. This takes into account the fact that the demographic dynamic in
the same period is several decimal points below that of the number of
Catholics.
With reference to the entire 2005-2014 period, the
number of baptized Catholics in Oceania increased at a slower rate than
the population (15.9% and 18.2%, respectively), while the contrary was
seen in the Americas (11.7% versus 9.6%) and in Asia (20% versus 9.6%).
The African continent undoubtedly showed the most growth: the number of
baptized (about 215 million in 2014), increased at a pace more than
double that of Asian countries (nearly 41%) and is far higher than the
population growth rate for the same period (23.8%).
Thus, apart from different demographic dynamics there
was obvious confirmation of the increased percentage in Africa (where
the number of baptized faithful rose from 13.8% to almost 17% of the
worldwide population) and of the net drop of that in Europe, falling
from 25.2% in 2005 to 22.6% in 2014. Although 2014 marked a minimal
fall, the American continents continue to be home to almost half of
baptized Catholics.
Asia, with over 60% of the global population, showed
moderate growth in the incidence of Catholics, with approximately 11% of
Catholics in the world. In Oceania the incidence of baptized faithful
remained stable at less than 0.8% of the worldwide Catholic population.
Between 2005 and 2014 the number of bishops rose from
4,841 to 5,237, an increase of 8.2%. This increase was marked in Asia
(over 14.3%) and Africa (over 12.9%), while in the Americas (over
6.9%), in Europe (over 5.4%) and in Oceania (over 4%) the figures were
below the worldwide average. Regarding these varied trends, however, the
distribution of bishops by continent remained substantially stable
throughout the period studied, with a higher concentration of the total
in the Americas and Europe. Also in Asia, where the number of bishops
grew considerably, the overall demographic statistics showed limited
growth, from 14.3% in 2005 to 15.1% in 2014.
There was a more homogenous and balanced distribution
by continent in the number of baptized faithful per bishop, passing
from 230,300 to 242,900 between 2005 and 2014; except for the singular
case of Oceania (where the low population density in the fragmented
territory of numerous islands and archipelagos creates completely unique
situations), the trend in Africa and Asia, continents where the spread
of Catholicism is more dynamic, is converging toward the global average.
From the statistics regarding diocesan and religious
priests, the first striking figure is that the overall consistency in
the number of priests increased by 9,381 between 2005 and 2014, from
406,411 to 415,792, and seems to have been consistent in recent years.
This applies globally, since the figures vary widely among individual
continents. In contrast with the notable increases in Africa (more than
32.6%) and Asia (more than 27.1%), Europe showed a fall of over 8%, and
Oceania less than 1.7%. Different growth rates were recorded worldwide
over time in the number of priests: the increase was stronger in the
first six years of the period under study, but practically null in the
last three years. In particular, the growth in the figures shows that,
following the steady rise up to 2011 in the number of ordinations to the
priesthood, there has been a steady, gradual decrease to date. The
negative aspects of the trend show that defections have progressively
decreased in number, while the death of priests, after a period of
annual fluctuation, has risen in recent years. In particular, the trends
of diocesan priests show overall growth in comparison to priests of the
religious orders; moreover, while the initial data showed a growing
trend in Africa, in the South and Central America, in Asia and Oceania,
they reveal, by contrast, a declining trend in the remaining areas,
Europe in particular. Religious priests, on the contrary, registered a
downward trend in the Americas as well as in Europe and in Oceania.
The data regarding diocesan and religious priests
demonstrate favourable trends overall in the areas previously studied,
while the remaining areas show a downward trend. Thus, when viewed in
relative terms, trends in the overall number of priests showed changes
in the following geographical areas: from 2005 to 2014, an increase was
seen in Africa, Southeast Asia, Central and South America; numbers in
the Middle East and Oceania remained virtually unchanged; lastly,
downward trends were recorded in North America and Europe — the latter,
in particular, showed a drop from 48.8% in 2005 to 43.7% in 2014.
The pastoral work of bishops and priests is supported
by other pastoral figures: permanent deacons, professed men and women
religious. The composition of these three groups of pastoral workers is
quite diverse. At the end of 2014, there were, worldwide, 44,566
permanent deacons, 54,559 professed men religious who are not priests,
and roughly 683,000 professed women religious. The evolutionary trends
also presented different characteristics.
Permanent deacons constitute the most rapidly
changing group over the course of the period: they grew from
approximately 33,000 in 2005 to almost 45,000 in 2014, with a relative
variation of over 33.5%. Although the increase is manifest everywhere,
its pace varied among the continents: in Europe the number of permanent
deacons increased significantly over nine years, rising from less than
11,000 to 15,000. The American continents also showed an increase: in
2014 the number rose to nearly 29,000 from approximately 22,000 in 2005.
There are no significant changes to report in the territorial
distribution of permanent deacons during the period examined: only a
slight decrease was shown in the relative number of deacons in America
and a growth in Asia. It is of interest to note that permanent deacons
are well represented in the Americas (North America in particular) with
64.9% of all deacons in the world, and also in Europe (32.6%). This
category, however, is scarce in Africa and Asia: these continents hold
barely 1.7% of the worldwide figure.
The practical ability of permanent deacons to assist
priests in performing pastoral work effectively in the territory,
however, is still limited. In the world, the distribution of deacons per
100 resident priests, in fact, was just 10.7 in 2014, with a minimum of
0.48 in Asia and a maximum of 23.5 in America. In Europe the quotient
is about 8%, while in Africa, 1.1 deacons serve alongside 100 priests.
Therefore, the dimension of the phenomenon is still rather modest for
their work to have a significant effect on the balance between the
demand and offer of ministry to the baptized faithful residing in the
area. In terms of development, however, it should be noted that there
tend to be a greater number in the territory precisely where the ratio
between baptized faithful and priests is reduced.
Instead, a slight decrease was reported in the number
of professed men religious who are not priests. In 2005 there were
54,708 worldwide, decreasing thereafter to 54,559 in 2014. It is also
noteworthy that the drop was concentrated in the Americas (less than
5%), in Europe (less than 14.2%) and in Oceania (less than 6.8%). On the
contrary there was an increase in Africa (over 10.2%) and in Asia (more
than 30.1%). Overall, in 2014, Africa and Asia represented almost 38%
of the total (up from 31% in 2005). Conversely, the group comprised of
Europe, the Americas and Oceania decreased to almost 10% over the period
under examination.
Professed women religious in 2014 represented a
population of 682,729, with almost 38% in Europe, followed by the
American continents with over 177,000 consecrated women and Asia with
170,000. In comparison to 2005, this group showed a decrease of 10.2%
which likewise involved the Americas, Europe and Oceania, with
significant negative variations (around 18-20%). On the contrary, there
was a decidedly steady increase of approximately 20% in Africa and of
approximately 11% in Asia. In light of these greatly varied trends, the
portion of the worldwide total of women religious grew in Africa and
Asia from 27.8% to 35.3%, as compared to Europe and America, where the
combined figure dropped from 70.8% to 63.5%.
The temporal development observed in the world
between 2005 and 2014 for the number of major seminarians (diocesan and
religious) showed an initial growth that continued until 2011, when the
total recorded was equal to 105.4% of the 2005 total. This was followed
by a slow but steady decline, which brought the 2014 figure down to
102.2%. With regard to consistency, the number of candidates to the
priesthood worldwide rose from 114,429 in 2005 to 120,616 in 2011, and
then dropped to 116,939 in 2014. The decrease observed in the overall
number of major seminarians between 2001 and 2014 involved all the
continents except Africa, where the number of seminarians increased by
3.8% (from 27,483 to 28,528). However, when the entire period from 2005
to 2014 is considered, the differences between the territorial areas
appear more evident. While Africa, Asia and Oceania show dynamic upward
trends (with growth rates of 21%, 14.6% and 7.2%, respectively), Europe
registered a 17.5% reduction over the same period, and the Americas
(particularly due to the negative trend in the southern hemisphere)
showed a drop of 7.9% compared to the start of the period. As a result, a
general re-evaluation of the role of the European and American
continents in the potential growth and renewal of priestly figures is
observed, with Europe’s share falling from 20.2% to 16.2%, and the
Americas’ from 32.2% to 29.1%, in contrast with the expansion in Africa
and Asia which represents an overall percentage of 53.9 of the worldwide
total for 2014 (24.4% and 29.5%, respectively).
Also in relative terms with respect to the number of
Catholics, the greatest movement was shown in Africa and Asia, with 133
candidates to the priesthood per one million Catholics in Africa in
2014, and about 247 in Asia. European and American figures (66 and 55,
respectively, which are far less significant and in decline in
comparison with 2005, would suggest a reduced offering of pastoral
services. Lastly, from the number of major seminarians per 100 priests,
one can form an idea of the generational replacement in the effective
exercise of pastoral ministry. Thus, also in this context, Africa and
Asia retain their primacy with 66 and 54 candidates per 100 priests
respectively, while in Europe the figure is 10, confirming an ongoing
stagnation in priestly vocations. The Americas and Oceania maintain an
intermediate position with 28 and 22 candidates to the priesthood per
100 priests in 2014. Overall, however, thanks to the upturn in Africa
and Asia, the total has gone from 28.16 to 28.12 major seminarians per
100 priests.
At the end of the quantitative survey conducted
overall and for large geographical areas both in terms of consistency
and of variations, one can draw approximate conclusions regarding the
most obvious phenomena regarding current trends.
Firstly one can note from most of the phenomena
analyzed, a certain dichotomy between the dynamics of the emerging
continents, Africa and Asia, and those of Europe, which is progressively
losing its centrality as the model of reference. This is not
surprising. Indeed, it seems rather obvious that the development of the
Church in the world cannot ignore the major trends underlying worldwide
development, especially for demographics. Thus, Europe has become the
most static continent, hindered by the net aging of its population and
by its low birth rate. The Americas as a whole are in an intermediate
position, but were the analysis to distinguish between North and Latin
America, divergences would likely arise, enabling at least a partial
comparison, first to Europe and second to Africa and Asia. Oceania
constitutes a reality unto itself, also due to its far more limited
demographics.
In the 2005-2014 period, the number of priests
increased overall, even if the significant increase of diocesan priests
and the marked decrease of religious priests should be noted.
Europe registered a heavy loss, which was largely
compensated by the lively trend shown by Africa and Asia regarding
diocesan priests. The Americas presented, for the same period, a 1.6%
growth: they have addressed the loss of 4,000 religious with just over
6,000 diocesan priests.
The average pastoral figure worldwide, expressed by
the number of Catholics per priest, grew noticeably and is higher in
Africa and the Americas, while in Europe it has been far more limited.
The situation may plausibly be modified in the coming years, since the
European clergy is older and weakened by lower renewal rates, while in
Africa and Asia the number of candidates to the priesthood is clearly
growing.
The relatively recent phenomenon of the considerable
increase in the number of permanent deacons is of great importance. The
dynamic trend shown by these workers is certainly not attributable to
temporary or contingent motivations, but seems to express new and
different choices in performing the work of spreading the faith.
Indeed, the increase of deacons is seen generally in Europe and the
Americas, less positive continents in terms of development in other
categories of pastoral workers.
Candidates to the priesthood present a positive trend
overall, however in this case as well, there are several reasons for
concern in Europe and the Americas, where a decline has been clearly
shown in recent years. Conversely, Africa and Asia show great vitality….
(Vatican Radio) For a child to be born sick is a “scandalous” problem for humanity. That was one of Cardinal Gianfranco Ravasi’s reflections Thursday as he opened in the Vatican day one of the Third International Conference on the Progress of Regenerative Medicine and its Cultural Impact. The President of the Pontifical Council for Culture partnered with the Stem For Life Foundation to organize what has been described as a “historic” three day event 28-30 April to look at the complex cultural and social framework of illnesses and at cutting edge research into cellular therapies.
In her opening remarks, the President of Stem For Life, Dr. Robin Smith, pointed to the growing range of therapies currently under study for the treatment of cancer, autoimmune disorders and rare diseases. The first in the series of conferences was launched five years ago, she noted, to foster a dialogue about the importance of stem cell therapy. Since then, the sector has progressed exponentially as scientists became increasingly aware of their ability to be “taught” to transform into a wide variety of tissue, cells and even organs.
Saving lives or playing God?
“Cellular cures are the light in front of us,” she said, but they need to be made more rapidly available to patients. Super computers and ever-more powerful diagnostic tools are making it easier to identify the right treatment for the right patient at the right time. The advances in cellular therapy are happening so quickly, she suggested, it will not be long before people begin to ask: can we design our own child? Choose its hair and eye colour, its height and intelligence? Can we turn back time and reverse aging? Are we playing God? The philosophical and ethical questions abound.
Smith invited us to have tissues at the ready for the heart-wrenching stories we were about to hear. Stories like Good Morning America anchor Robin Roberts’ exhausting battle with breast cancer which evolved into any doctor’s worst nightmare: Mylodisplastic Syndrome (MDS) or pre-Leukemia. She was told she had less than two years to live. But thanks to her sister, Sally, Robin received a perfect match for a bone marrow transplant that saved her life.
Transplants and “Reengineering” can transform lives
We heard that more than 70 disorders can be treated with bone marrow transplants. Nearly half of the 50,000 such transplants performed around the world each year require a donor.
Though national registries have made matching up donors to patients easier in recent years, finding the right fit can take months. That, even though there are more than 20 million voluntary bone marrow donors worldwide. Scientists are finding ways to train bone marrow cells to adapt to new hosts so they won’t be rejected by the body’s immune system. They’re also finding promising new techniques by taking a patient’s own cells and re-programming them to fight off “bad” cells. One such technique is called “chimeric antigen receptor T-cell therapy,” a revolutionary but experimental treatment which reengineers the patient’s cells to kill off all cancerous cells.
17 year old Nicholas Wilkins was diagnosed with the most common childhood cancer, Acute Lymphoblastic Leukemia, a cancer of the blood and bone marrow, at age 4. After repeated relapses, he received a bone marrow transplant from his sister. But even that didn’t work. In 2013, his desperate parents enrolled Nicholas in a trial at the Children’s Hospital of Philadelphia where doctors reinfused reengineered T-cells back into his body to attack the cancer. Three years later, he is cancer free and doctors are hopeful he will stay that way because the “good” T-cells are continuing to fight the cancer.
Researchers are hopeful this technique can be just as promising in the treatment of other diseases, such as rare and autoimmune disorders.
90% of kids with cancer die in developing nations
Georgetown University Health Care Ethics Professor Fr. Kevin Fitzgerald, sj told us that some 80-90% of children with cancer in industrialized countries are cured while 90% die in poor countries. The moral imperative, then, is to ensure adequate medical care in developing countries: an invitation to policy makers, businesses, the pharmaceutical sector and medical and research communities to collaborate to make this a reality. And, he reminded us that as the largest health care provider in the world, the Catholic Church is ready to partner with them.
Eugene Gasana Jr was 13 when he was diagnosed with Hodgkin lymphoma in 2011 and after intensive chemotherapy and radiation therapy in New York, he has been in remission. But Eugene wasn’t satisfied with just getting better himself. He wanted kids in his home country of Rwanda to have access to similar, high quality medical care. Thanks to a Foundation set up in his name and donors, his paediatric oncologist, Dr. Tanya Trippett of Memorial Sloan Kettering Cancer Center, is heading up a program to provide a hospital and cancer care for children in Kigali for the east African region.
According to Trippett, serving cancer patients in Rwanda and other parts of Africa is a challenge because of the lack of quality diagnostic equipment and in some cases, the absence of chemotherapy and cancer drugs. The infrastructure is poor and oncologists are few. Patients go hungry in hospitals which also struggle to provide follow-up care for families who live far away. She wants to see more cooperation between Western hospitals and clinical professionals to provide training to Rwandan and other African doctors, nurses and hospital staff and greater access to funding.
Dr. Raphael Rousseau, Medical director of Genentech, a member of the Roche pharmaceutical group, would like to see more clinical trials in developing countries, using the same rigorous standards as Western trials. He says he’s frustrated that drugs are not getting soon enough to children with cancer and appealed to drug companies to develop new therapies for cancer, especially in developing countries “where cancer is lethal.” This not an area of competition, he said, “we’re all in it for a good cause.”
Cord blood’s life-saving stem cells
Dr. Joanne Kurtzberg of Duke University Medical Center works with cord blood stem cells to find cures for brain diseases like cerebral palsy, or autism, and in some cases, with remarkable results. Not long ago, after a woman gave birth, the placenta used to be thrown out in the trash, she said. But now, the stem cell-rich material can be frozen and stored, perhaps for decades, in the some 700,000 public cord blood banks around the world until it is needed for therapy. Some four million banks preserve cord blood for private use. Cord blood can be an alternative source, she said, for patients who can’t find a matching donor.
Dr. Yong Zhao of Hackensack University Medical Center is finding encouraging results using cord blood cells for multiple autoimmune and inflammation-related diseases.
The rare disease challenge
The new treatments evolving are many: “nano technology,” “nano chips,” “gene therapy” and “gene editing” were some of the terms thrown out by the U.S. National Institute of Health’s Dr. Stephen Groft who said 4-8% of the population suffers from a rare disorder. Some 8,000 rare diseases have been identified, and most have a genetic origin, but more diseases are occurring and mutating. Multiply that by family and friends, he said, “and you have a big population affected by rare diseases.” A lack of information on such disorders, misdiagnosis and lack of treatments are the real challenges facing patients with rare diseases.
But Dr. Groft is among a number of health experts worldwide who are compiling data bases of patients, doctors, symptoms, and treatment protocols so that the global health community can study these rare diseases and communicate with each other about them. Social media plays a big part here, he said, as patients exchange their stories and search for clinical trials in which to participate and doctors looking for colleagues who have come across similar patient cases.
We heard about 14 year old Johnathan who suffers from a disorder known as “Butterfly disease,” a frightfully painful condition that makes his skin as fragile as powdery butterfly wings but has nothing to do with the beauty of the delicate creature. Johnathan and his mom spend hours each day dressing him, bathing and changing the bandages covering the sores on much of his frail body. Here was one of the many times I reached for a tissue on Thursday. Johnathan knows he probably won’t survive past his mid- 20’s.
Then, there were the children with Batten disease, which one father described as a “thief” which comes in the night to steal away your small child’s vision, his brain, his ability to walk and talk. And, the kids suffering childhood blindness who are receiving encouraging help with gene therapy.
Dr. Neil Warma of Opexa Therapeutics, is working with personalized T-cell vaccines to fit each individual’s patient’s profile to treat an array of autoimmune disorders including Multiple Schlerosis and NMO so the body can repair itself. New therapies are also evolving in the treatment of Type 1 Diabetes or juvenile diabetes giving fresh hope to patients suffering from this debilitating disorder too.
Tracey McClure
(from Vatican Radio)…