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DANIEL RĂDUȚĂ ROMANIAN ASSOCIATION AGAINST LEUKEMIA Center of Excellence for treatment of hematologic diseases

Center of excellence for treatment of hematologic diseases

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Page 1: Center of excellence for treatment of hematologic diseases

DANIEL RĂDUȚĂ

ROMANIAN ASSOCIATION AGAINST LEUKEMIA

Center of Excellence for treatment of hematologic

diseases

Page 2: Center of excellence for treatment of hematologic diseases

Briefly

Center of Excellence at Bucharest University Hospital Treatment of hematological diseases

One of the most renowned European centers offers the know-how San Raffaele Hospital, Milano, Italy

ARIL (Romanian Association against Leukemia) supports the project

Page 3: Center of excellence for treatment of hematologic diseases

Summary

Hematological diseases and their treatment in Romania Through the story of a leukemia patient: me

The need for improving Romanian conditions Expressed in facts and numbers

Our proposal

The project

People and expertise

Page 4: Center of excellence for treatment of hematologic diseases

What is a hematological disease

Hematological diseases affect the bone marrow and blood There are chronic and acute forms Leukemia and lymphoma account for 90%

I was diagnosed with Acute Leukemia in 2009 Left untreated, acute forms kill you in a few weeks

Some say is a death sentence I’m the living proof of the contrary

Page 5: Center of excellence for treatment of hematologic diseases

The treatment

Two major therapies Chemotherapy (full cycle) Bone marrow transplantation (BMT), preceded by initial

chemotherapy

Acute forms are the most difficult to treat Aggressive chemotherapy that weakens the patients immunity and

organism One needs proper sterile facilities to avoid (often fatal) complication BMT is required in many of such cases

I was treated in one of the best facilities in Romania However, the sterile conditions are still lower than the standards As a result, many patient suffer fatal complications Lucky me …

Page 6: Center of excellence for treatment of hematologic diseases

Bone marrow transplantation

BMT is increasingly preferred as the best solution My form of leukemia required a BMT

Only two types of transplant are performed in Romania Autologous (using one self's healthy cells) Matched Related Donor (MRD): uses stem cells from a fully

compatible brother or sister

I needed one of the others Partially Matched Related Donor Matched Unrelated Donor (MUD) With stem cells from Cord Blood

Page 7: Center of excellence for treatment of hematologic diseases

BMT in this cases

In another EU country at a cost of at least 120.000€

As a Romanian, you have two choices Pay the money from your own pocket Access special government funds

A fund raising campaign got me the money in 2 monthsThe government procedure can take as long as 12

months While waiting, a patient receives further aggressive chemotherapy

Again I was lucky!

Page 8: Center of excellence for treatment of hematologic diseases

A few other patients who did not find cure in Romania

People you see here are some that appeared in mass-media and some we had time to request their explicit agreement

Page 9: Center of excellence for treatment of hematologic diseases

Situation in Romania

European Cancer Observatory estimated

3265 people

were diagnosed with leukemia or lymphoma in 2008

At most 140 BMT

were performed in 2009, according to the Romanian official press releases

15601705

LeukemiaLymphoma

Sources: European Cancer Observatory ( http://eu-cancer.iarc.fr ) , Romanian Newspapers and Journals

4%

96%

Therapy

BMTOnly chemotherapy

Page 10: Center of excellence for treatment of hematologic diseases

Situation in Europe

A study of EBMT shows that most European countries perform at least 200 BMT per 10 million inhabitants

with many of them performing at least 400 BMTper 10 million inhabitants

EBMT (European Group for Blood and Marrow Transplantation) study can be found here

HSCT stands for Hematopoietic Stem Cell Transplantation which is just another name for BMT

Page 11: Center of excellence for treatment of hematologic diseases

Comparison

Incidence of leukemia and lymphoma does not vary significantly from year to year

BMT procedures in Europe increased each year

So we may perform a fairly accurate comparison between Romania and EU for 2009

BMT per 10 million0

50

100

150

200

250

300

350

400

RomaniaWestern EUCentral EU

Page 12: Center of excellence for treatment of hematologic diseases

How many would have a better chance

If Romania reaches at least Central Europe’s minimum BMT rate,

260 more patients

would be transplanted each year, thus having a much better chance for long-term survival

4%

96%

Actual

BMT Full chemotherapy

12%

88%

Desired

BMT Full Chemotherapy

Page 13: Center of excellence for treatment of hematologic diseases

Our proposal

Center of Excellence at Bucharest University Hospital (SUUB)

People involved The team from San Raffaele Hospital in Milan, lead by dr. Fabio Ciceri The team from SUUB lead by dr. Horia Bumbea and dr. Ana Vlădăreanu

Competencies Italian team agreed to transfer the expertise and competencies the

Romanian team does not yet poses

Facility Equipping a brand-new transplant facility Improving the existing hematological facility Updating the diagnostic laboratory with the latest technology

Page 14: Center of excellence for treatment of hematologic diseases

HSR, the key partner

Who is HSR Bone Marrow Transplantation Unit at San Raffale Hospital,

Milano, Italy Participants in this project include dr. Fabio Ciceri, dr. Jacopo

Peccatori, dr. Andrea Assanelli, cs. Vincenzo Matozzo

They will offer intensive training and supervision to professionals at SUUB They evaluated three potential partners in Romania They chose SUUB team as the most promising one

The collaboration is ready to take off Training plan is made, resources and costs estimated

More about HSR on their website: http://www.fondazionesanraffaele.it/EN_home/index.html

Page 15: Center of excellence for treatment of hematologic diseases

More about HSR

BMT Unit is considered one of the best in Europe

Recognized by the community as having very good research activity

One of the few centers in Europe who successfully perform PMRD transplants on a large scale

Comparison to Romanian centers HSR performed more transplants than all our centers HSR performs all 5 types of transplant, compared to

only 2

Page 16: Center of excellence for treatment of hematologic diseases

Project goal & objectives

The Goal Improve the treatment conditions in Romania and

consequently save more patients Perform PMRD transplants in Romania

Main Objectives 30 transplants in the 2nd year of functioning The first PMRD transplant in Romania in the 2nd year

Secondary Objectives Build up transplant expertise at SUUB and also in the

Romanian medical community Expand the transplant center in the following years

Page 17: Center of excellence for treatment of hematologic diseases

Project activities

Management

Communication plan

Monitoring & controlling

Planning & estimations

People & Responsibilitie

s

Medical training

Facility costs

Other costs

Project documentation

Obtaining funds

Applying for Swiss funds

Applying for EU programs

Donations and sponsors

Medical training

Training at HSR

Interventions at HSR

Supervised activity at

SUUB

Assisted activity at

SUUB

Facility equipment

Acquisition process

Implementation

Communication & PR

Project Website &

Blog

Online Media

Traditional Media

Presentations and

networking

Page 18: Center of excellence for treatment of hematologic diseases

Project estimated costs

Facility costsStaff training Interventions costsOther costs

Interventions costs would be supported by the Romanian Public Assurance

For the rest, we must find solutions

Facility50%

Train-ing4%

In-ter-ven-tions40%

Other6%

5.000.000 €

Page 19: Center of excellence for treatment of hematologic diseases

Project team

The backbone consists of the two great medical teams A very promising medical team at SUUB One of Europe’s most renowned medical teams as mentors

Supporting team Full-time involvement of ARIL’s president, Monica Bunaciu,

formerly diagnosed with leukemia Daniel Răduță, formerly diagnosed with leukemia, Project

Manager at BitDefender Adina Ovedenie, ARIL volunteer, expert in European funds Diana Stoleru, ARIL volunteer, Chanel Manager at BitDefender Ruxandra Predescu, ARIL volunteer, PR specialist

Page 20: Center of excellence for treatment of hematologic diseases

Thank you

Daniel Răduță

Romanian Association Against Leukemia (ARIL)

[email protected] draduta