Appendix #05 — High-Cost Account + catastrophic and rare diseases
Front: operational-financial — defense against the questioning of whether ARTERIA can sustain the weight of the most expensive pathologies and at the same time guarantee access to those who need it most
The heart pumps with the same force to the toe as to the brain. The blood does not ask the tissue whether its treatment is expensive. But the system does ask, and that is why some live and others die waiting. ARTERIA does not ask. It guarantees flow where it is most needed, and counts down to the last peso so society knows where it goes.
Executive summary
The Colombian system currently manages high-cost pathologies through (a) the High-Cost Account (CAC), supervised guild self-regulation that redistributes risk between EPS by adjusted enrollees, not by event, (b) reimbursements + Maximum Budget (PM) for technologies not included in the PBS, a mechanism that generates ~COP 5–6 trillion annually in financial friction with settlements that take 18–36 months, (c) MIPRES as electronic prescription fragmented by EPS, and (d) National Donation and Transplant Network with dispersed territorial coordination.
Structural thesis: ARTERIA does not need a separate "High-Cost Account" mechanism. The concentration of expenditure (the ~5% of enrollees who consume ~50% of resources) is managed within the same event-based payment smart contract, with (i) risk-adjusted insurance premium (UPE — see §6.5 of the main technical document and Appendix #03), (ii) catastrophic-risk pool financed by a fixed percentage of collections, (iii) direct payment from ADRES to IPS / pharmaceutical provider upon confirmed event (eliminating the reimbursement cycle), (iv) national registry of high-cost + rare pathologies as a module of the unified national registry (not a separate system), (v) centralized price negotiation for low-prevalence / high-cost medicines, (vi) automatic organ matching on a unified national waiting list.
Explicit commitment: no high-cost patient loses treatment due to the transition to ARTERIA. Effective coverage is expanded, not restricted. Fragmentation is closed. Authorization waiting times are structurally eliminated by the smart contract.
§1. Diagnosis — the current reality of high cost and catastrophic conditions
1.1. Current institutional framework
| Component | Legal framework | Current operator |
|---|---|---|
| High-Cost Account (CAC) | Decree 2699/2007, Decree 2353/2015, Resolution 2463/2014, Resolution 273/2019 | High-Cost Account Association — guild self-regulation among EPS + ACEMI + Gestarsalud + ACHC, supervised by MinSalud/SuperSalud |
| List of high-cost pathologies | Resolution 1393/2023 (current update) | MinSalud updates periodically |
| Rare diseases / orphan diseases | Law 1392/2010 + Law 1438/2011 art. 140 + Resolution 651/2018 (periodically updated) | National Registry of Rare Diseases administered by MinSalud + SISPRO |
| MIPRES — prescription of non-PBS technologies | Resolution 1885/2018 + updates | Each EPS operates its MIPRES; MinSalud consolidates |
| Maximum Budget (PM) — partially replaced reimbursement | Resolution 205/2020 + updates | ADRES settles with each EPS on an adjusted per-capita basis |
| National Donation and Transplant Network | Decree 2493/2004 + Law 1805/2016 (presumed consent) + Resolution 2640/2005 | INS (National Institute of Health) — National Coordination + 6 Regional offices |
| Cancer care — Ten-Year Cancer Control Plan | Resolution 4505/2012 + Ten-Year Public Health Plan 2022-2031 | INC (National Cancer Institute) + accredited oncology network |
1.2. Expenditure concentration — the Pareto reality
| Patient stratum | Approx. % of enrolled population | Approx. % of health expenditure |
|---|---|---|
| Top 1% (highest individual expenditure) | 1% | ~25–30% |
| Top 5% | 5% | ~50–55% |
| Top 10% | 10% | ~65–70% |
| Remaining 90% | 90% | ~30–35% |
Operational observation: the system does not break by caring for the 90%. It breaks by the opaque + delayed + judicialized management of the 5–10% that concentrates the spending. ARTERIA must design specifically for that 5–10%, not as an exception but as the central case.
1.3. The expenditure-concentrating pathologies
According to official CAC reports + Ten-Year Public Health Plan + IETS studies:
| Pathology / group | Estimated relative burden (% of high-cost expenditure) |
|---|---|
| Chronic kidney disease stage 4–5 (dialysis, kidney transplant, therapies) | ~22–28% |
| Cancer (all types — breast, cervix, colorectal, prostate, leukemias, gastric, lung, others) | ~25–30% |
| HIV/AIDS (ART + follow-up + complications) | ~8–10% |
| Hemophilia and other hereditary coagulopathies | ~5–7% |
| Rheumatoid arthritis + lupus + other autoimmune diseases (biologics) | ~6–8% |
| Multiple sclerosis + other demyelinating diseases | ~3–5% |
| Severe COPD + chronic respiratory diseases | ~3–5% |
| Chronic hepatitis C (DAA — direct-acting antivirals) | ~2–3% |
| Individually rare diseases (~5,000 entities, ~2 million total patients) | ~5–8% jointly |
| Transplants (non-renal) — liver, heart, bone marrow, others | ~2–4% |
| Prolonged ICU + spinal cord trauma + catastrophic intensive care | ~3–5% |
| Congenital heart disease + complex arrhythmias + severe heart failure | ~3–5% |
1.4. The four structural problems of the current model
- Clinical information fragmentation. A cancer patient treated at three IPS over six months may have three disconnected medical records, three versions of the therapeutic protocol, and repeated exams due to ignorance of previous ones. The current CAC reports by enrollee, but clinical data does not flow between providers.
- The reimbursement cycle. A non-PBS technology prescribed in MIPRES can take 18–36 months to be settled between EPS and ADRES. This generates (a) massive overdue accounts receivable with IPS and pharmaceutical providers, (b) deductions, returns and lawsuits, (c) treatment interruption while the patient waits for settlement. AFIDRO reports COP 4.42 trillion of accumulated pharmaceutical debt as of March 2026 — mostly originating from this cycle.
- Brutal regional inequity. Advanced therapies (complex transplants, third-line oncology, gene/cellular therapy, neurointervention) are concentrated in Bogotá, Medellín, Cali, Barranquilla, Bucaramanga. A patient from Chocó with hematologic cancer can take months to access treatment — if they access it.
- Judicialization as access mechanism. Tutela claims for access to expensive medicines / procedures: ~300,000–400,000 annually according to the Ombudsman. What is structurally a right is operationally litigation.
§2. How ARTERIA operates with high cost — specific architecture
2.1. The national high-cost registry AS A MODULE of the unified national registry
There is no "separate High-Cost system". There is a single national citizen registry (see Appendix #04 §3.1) with specific clinical attributes when the patient has a high-cost condition: type of condition, date of diagnosis, stage or international clinical coding (ICD-11, ORPHANET for rare diseases, TNM for oncology), active therapeutic plan, reference center, specific medicines in use, therapeutic intent (curative or palliative when applicable).
Any IPS treating a patient with one of these conditions accesses immediately (a) the complete medical record with oncologic, nephrologic or case-specific antecedents, (b) the current therapeutic protocol, (c) the list of active medicines with doses and times, (d) the relevant previous exam results. Zero deductions for verification, zero loss of continuity, zero repeated exams.
The specific data schema of the registry, the exact fields, and the structure of identifiers are documented in the technical repository under control of the Foundation of the Standard.
2.2. Elimination of reimbursement as a mechanism — direct payment from ADRES on event
Under the current model: the EPS authorizes a non-PBS technology → prescribes it in MIPRES → the IPS or provider delivers → the EPS pays the provider with its own funds → the EPS requests reimbursement from ADRES → ADRES audits → 18–36 months later it is settled. Meanwhile, massive overdue receivables.
Under ARTERIA: the IPS / provider reports the clinical event (medicine delivered, procedure performed, device implanted) → the smart contract verifies (a) clinical appropriateness according to national protocol, (b) registration of the patient with the authorized condition, (c) national reference price → ADRES pays the provider directly within 7–15 days. Reimbursement disappears as a mechanism. Structural overdue receivables disappear.
The EPS — under the risk-manager model, not insurer — lose the friction of reimbursement but also the structural function of absorbing it. The risk-adjusted per-capita UPE of each EPS manager covers clinical and administrative management, not the totality of the therapeutic cost. The therapeutic cost is assumed directly by the system, via ADRES, on a verifiable event basis.
2.3. Catastrophic risk pool — structural financing
A fixed percentage of national collections (contributory contributions + subsidized transfers + current Nation income earmarked for health) — on the order of 8–12% — is allocated to the Catastrophic Risk Pool. This pool:
- Covers direct payment of clinical events related to high-cost pathologies on the national list
- Is governed by national therapeutic protocols periodically updated with evidence (IETS + scientific societies)
- Is publicly auditable: any citizen can consult how much was spent on each category, in each region, in each center
- Is adjusted annually according to epidemiological evolution + incorporation of new technologies + price negotiation
This is NOT a separate fund in the financial architecture. It is a portion of the general flow of national collections, labeled by destination, managed in the same public accounting book as the rest of the system.
2.4. MIPRES under ARTERIA — fusion with regular prescription
The current MIPRES is a system parallel to regular prescription, which has caused serious operational frictions. Under ARTERIA, every prescription is the same prescription: the physician prescribes in the HCEU; the system automatically verifies whether the prescription is in the PBS or requires extraordinary authorization; if it requires authorization, the smart contract verifies according to national protocol + appropriateness + patient condition; if approved, payment is executed. The physician does not see the operational difference between PBS and non-PBS: only sees the system's response on effective coverage.
2.5. Algorithmic appropriateness audit of pharmaceuticals
Prescriptions of high-cost medicines are automatically audited at three levels:
| Level | Verification | Action |
|---|---|---|
| 1. Indication | Is the medicine an authorized indication for the patient's registered pathology? | Automatically approves if YES |
| 2. Dosage and duration | Do dose, interval, duration correspond to the national protocol? | Automatically approves if YES |
| 3. Continuity and response | Is there documented clinical follow-up of therapeutic response? | Initially approves; requests update when control deadline passes |
If all three levels approve → automatic payment in 7–15 days. If any fails → human review by auditing physician (with maximum regulatory deadline of 72 hours). If extraordinary human review approves → payment in 7–15 days. If rejected → clinical-administrative appeal channel for patient + treating physician within 7 business days.
Zero deductions after payment. Audit is prospective, not retrospective.
§3. Rare diseases — real access, centralized negotiation
3.1. The national rare disease registry within ARTERIA
Law 1392/2010 + Resolution 651/2018 created the National Registry of Rare Diseases. Today it operates fragmented — each EPS reports to SISPRO with variable quality; patient foundations (Fundación Esperanza, ACOPEL, Fundación HUPE, foundations by specific pathology) maintain their own parallel registries.
Under ARTERIA: a single national registry, module of the citizen registry, with:
- International ORPHANET code + ICD-11 + translation into national clinical language
- Complete diagnostic history (rare diseases frequently take 5–10 years to diagnose — the diagnostic history is the asset)
- Patient genetics (when applicable and with strict protection of sensitive data — see Appendix #02)
- Network of national centers with experience in each specific pathology
- Access by patient foundations (with consent of the holder or legal representative) to the aggregated cohort information — preserving individual privacy
3.2. Centralized price negotiation for rare diseases
A rare disease with 30 patients in Colombia and a medicine costing COP 500 million per patient per year CANNOT be negotiated fragmentedly between 30 different EPS. Today this produces irrational prices + unequal access + massive judicialization.
Under ARTERIA: MinSalud + ADRES negotiate directly with providers for all rare pathologies and for low-prevalence high-cost medicines. The negotiation is done once, for the entire country, with published price. Mechanisms:
- Centralized purchase with national volume commitment
- Risk-sharing agreements (payment for verifiable therapeutic outcome when applicable)
- Early access to technologies under evaluation (with strict follow-up protocols)
- Direct importation by SalubMed (state logistics operator) when efficient — see §2.bis of the main technical document
3.3. Guarantee of non-discontinuation during the transition
Explicit binding commitment: no patient with rare disease in treatment at the time of ARTERIA implementation loses their medicine or treatment due to the transition. The system assumes the cost of the current treatment from day one of implementation in their territory, while the registry is adjusted and centralized negotiation is set up.
§4. Transplants — Unified National Network with automatic matching
4.1. The current model
The National Donation and Transplant Network (Decree 2493/2004 + Law 1805/2016 — presumed consent) operates with dispersed territorial coordination among 6 INS Regional offices. Organ allocation follows defined clinical criteria (compatibility, time on list, severity) but information travels with friction and a real-time unified national waiting list does not exist.
4.2. ARTERIA model
- Real-time unified national waiting list. Any IPS accredited for transplants accesses the real national position of the patient, not their regional position.
- Automatic matching based on transparent clinical criteria. When an organ is reported available, the matching algorithm (public, auditable, certifiable, with no discretionary variables) produces a prioritized list of recipients. The human decision is limited to clinical verification of the proposed match.
- Non-use decision justified in HCEU. If a team decides not to use the organ for the highest-priority recipient, they must document the clinical reason in HCEU. That documentation is auditable.
- Complete post-transplant traceability. Recipient follow-up at 1, 3, 5, 10 years with verifiable clinical markers and public outcomes by accredited center.
4.3. Donors and presumed consent
Law 1805/2016 established presumed consent. ARTERIA includes in the national registry the attribute "will regarding donation" with options: presumed consent (in effect by default), explicit registered opposition (with immediate effect), explicit affirmative registered will (reinforces the presumed). The holder can change their will at any time through the national portal, with no in-person procedure. The registered will is binding for procurement teams.
§5. Oncology patients — the paradigm of well-managed high cost
5.1. Ten-Year Cancer Control Plan and oncology network
The Ten-Year Public Health Plan 2022–2031 and INC guidelines define the accredited oncology network with complexity levels. ARTERIA operates within that institutional framework, without replacing it.
5.2. ARTERIA operational commitment for oncology
- Time from diagnosis to treatment initiation ≤ 30 days (international standard for cancers in general; specific standard for pediatric cancers and acute leukemias: ≤ 7 days). Smart contract with differential payment factor when the standard is met, reduced factor when not met, and monthly public report by oncology IPS.
- National therapeutic protocols updated with evidence (IETS + Colombian Society of Clinical Oncology + Colombian Society of Pediatric Hematology and Oncology + INC). Algorithmic audit according to protocol, already described in §2.5.
- Access to advanced therapies with structural financing. CAR-T therapy, specific targeted therapies, gene therapy, immunotherapy, advanced radiotherapy (proton when indicated) — available at designated national centers, financed from the Catastrophic Risk Pool, without tutela.
- Integrated palliative care in the network — Law 1733/2014 (Consuelo Devis Saavedra). The patient with palliative intent accesses palliative care from the moment of change in therapeutic intent, with interdisciplinary team coordination + home support + access to opioids + psychological support for patient and family.
§6. ICU, trauma, non-oncologic catastrophic care
6.1. Payment per clinical episode (DRG / APR-DRG), not per day
Appendix #03 §3.3 already established payment per episode for complex hospitalization. Prolonged ICU, spinal cord trauma, severe polytrauma, decompensated heart disease — all follow that model: fee per episode according to principal diagnosis + complications + comorbidities, not per day of stay. This incentivizes quality of care, not administrative prolongation of stay.
6.2. Continuity of post-ICU care
Today 20–40% of patients who survive prolonged ICU are left in rehabilitation limbo. Rehabilitation requires additional authorization, frequently denied or delayed, which produces avoidable functional sequelae.
Under ARTERIA: the rehabilitation plan is included in the episode protocol. The rehabilitation IPS is automatically notified of the ICU discharge. The smart contract pays for rehabilitation as continuity of the episode, without additional authorization.
§7. Adversarial defenses
7.1. "Eliminating reimbursement will bankrupt the EPS" — response
The risk-manager EPS under ARTERIA do not need to absorb the catastrophic therapeutic cost — that cost is assumed directly by the system via the Catastrophic Risk Pool and direct ADRES payment. The per-capita UPE covers clinical and administrative management, not the treatment receivables. Reimbursement should never have existed as a structural financial mechanism — it was an emergency solution that became chronic. Eliminating it frees the EPS from its most toxic financial burden and at the same time eliminates the friction that indebted them. No pharmaceutical provider or IPS is affected: they bill the system directly, in 7–15 days, on verifiable events.
7.2. "Centralized price negotiation violates competition" — response
Competition has function when there are multiple providers and distributed bargaining power. For a rare disease with one medicine and one worldwide monopoly provider, "competition" is fiction. The price is set by asymmetric power, not by market. Centralized national negotiation restores power symmetry — the Colombian State negotiates with the laboratory on behalf of the 30 national patients, not each EPS separately on behalf of its 2 or 3 patients. This is exactly what the health systems of the United Kingdom (NICE), Australia (PBS), France (HAS), Germany (G-BA) and other international references do — without being considered a violation of competition.
7.3. "Rare-disease patients will lose the care they receive today" — false
Binding commitment: non-discontinuation during the transition (§3.3). The patient with rare disease in treatment continues receiving it from day one of implementation. What changes is the administrative flow, not the treatment.
7.4. "The government does not have money to pay high cost directly" — critical distinction
The system ALREADY pays high cost. The question is not whether it pays or does not pay — it pays. The question is how it pays, in how much time, with how much friction and with how much auditability. Today it pays via a reimbursement cycle that takes 18–36 months, generates COP 5–6 trillion annually in financial friction, and produces massive judicialization. ARTERIA pays the same therapeutic cost with elimination of the friction cycle + public auditability + payment time of 7–15 days. The change is one of efficiency and traceability of expenditure, not of volume of expenditure.
7.5. "The transplant matching algorithm can be rigged" — response
The matching algorithm is open source, auditable, with public criteria. Each decision is traceable. If a team decides not to use the organ for the prioritized recipient, they must document the clinical reason in HCEU — that documentation is auditable by SuperSalud, INS, the Ombudsman, and by any citizen via the transparency layer. This does NOT exist today. The current opacity is the scenario of greatest manipulation risk; algorithmic transparency reduces it.
7.6. "Patient foundations lose their role" — opposite
Foundations gain a structural role. ARTERIA enables them as (a) representatives of the patient cohort in technical protocol panels, (b) interpreters of public aggregated data for their communities, (c) actors in centralized negotiation (their voice informs the negotiation), (d) operators of complementary services (accompaniment, legal counsel, psychological support). What they lose is the role of judicial agent — tutela as an access tool diminishes because access is guaranteed structurally. This is an objective, not collateral effect.
7.7. "Algorithmic audit = automated denial" — clear response
Algorithmic audit APPROVES by default when there is indication + protocol + registered patient. It only escalates to human review when there is misalignment. Human review has a maximum regulatory deadline (72 hours), and denial has an appeal channel for the patient + treating physician within 7 business days. The algorithm is an access facilitator, not a denial filter. Automated denial is exactly what the current EPS model does — discretionary authorizations based on opaque criteria. ARTERIA inverts the incentive.
7.8. "National protocols will limit the physician's clinical freedom" — distinction
National protocols are evidence-based + periodically updated + subject to documented exceptions. The physician who believes a particular case requires deviating from the protocol documents the clinical reason in HCEU; the auditor's human review evaluates the appropriateness. This does NOT restrict clinical freedom — it operationalizes it with documentary responsibility. The opposite model (zero protocols, totally discretionary decision) is financially and clinically unfeasible: no public health system operates that way.
7.9. "Innovative therapies will take longer to reach Colombia" — response
Today innovative therapies reach Colombia with a delay of 3–8 years versus the United States / Europe, frequently because of the friction of the approval + reimbursement + fragmented negotiation system. ARTERIA shortens the cycle: the incorporation decision is made once nationally, with evidence evaluation + centralized negotiation + national protocol defined in a process of 12–18 months maximum. The early access under strict follow-up model (parallel to the EMA model in Europe) allows acceleration for therapies with strong preliminary evidence and pathologies without a therapeutic alternative.
7.10. "This will reduce private investment in oncology and rare diseases" — distinction
Private investment in clinical infrastructure (oncology IPS, transplant centers, genetic laboratories) is preserved and incentivized — ARTERIA pays on verifiable event with a quality factor. Centers that meet standards of time, outcome, and traceability receive a higher payment factor. What is reduced is the profitability of administrative payment intermediation (reimbursement management, opaque contracts with pharmaceuticals, discretionary authorizations) — and that reduction is the design objective, not a collateral effect.
§8. Implementation timeline
| Phase | Component | Months from start | Prerequisites |
|---|---|---|---|
| Phase 0 | Load high-cost pathology list + rare-disease registry into the national ARTERIA registry | 0–6 | Base ARTERIA deployment |
| Phase 1 | Smart contract for the 5 concentrating pathologies (CKD, cancer, HIV, hemophilia, autoimmune) | 6–18 | Updated national protocols + agreements with accredited network |
| Phase 2 | Rare diseases + centralized negotiation | 12–24 | Technical panel with patient foundations + IETS + scientific societies |
| Phase 3 | Transplants — national list + automatic matching | 18–30 | ARTERIA↔INS operational agreement + audited matching algorithm |
| Phase 4 | Total elimination of the reimbursement cycle + Maximum Budget | 24–36 | Direct ADRES↔IPS/provider payment in stable operation |
| Phase 5 | Permanent regime | 36+ | Continuous adjustment with evidence and CNTS |
§9. Institutional framework — who does what
| Actor | Role under ARTERIA |
|---|---|
| MinSalud | Steward + defines national protocols + high-cost pathology list + rare disease list |
| ADRES | Pays directly to IPS / providers on confirmed event; manages the Catastrophic Risk Pool |
| IETS (Institute for Technology Assessment in Health) | Evaluates evidence + recommends incorporation + recommends reference prices |
| INS (National Institute of Health) | National Transplant Network Coordination; epidemiological surveillance |
| INC (National Cancer Institute) | Oncology technical stewardship + Ten-Year Plan + accredited network |
| INVIMA | Sanitary surveillance + marketing authorization |
| SuperSalud | Surveillance of compliance with times and standards; self-initiation of processes when ARTERIA detects non-compliance |
| SalubMed (state logistics operator — see §2.bis main doc) | Importation + distribution of high-cost rare-disease medicines when efficient |
| Scientific societies | Technical panel for protocols; clinical representation in CNTS and technology-incorporation panels |
| Patient foundations | Representation in technical panels; accompaniment; interpreter of public data for their communities |
| EPS managers | Clinical + administrative management of their enrollees (without assuming therapeutic receivables) |
| IPS accredited for high cost | Clinical care according to national protocol; reporting of events to the registry; direct billing to ADRES |
§10. Conclusion
High cost is the stress test of the health system. If the system works for the 5% that concentrates 50% of the spending, it works for everyone. If it fails there, it fails in what matters most ethically and what costs most operationally.
ARTERIA does NOT create a separate system for high cost. It integrates it into the same national registry, the same payment smart contract, the same clinical information flow, with three specific adjustments: risk-adjusted premium, structurally financed catastrophic risk pool, direct ADRES payment on event without reimbursement cycle. Reimbursement as a mechanism disappears. Tutela as an access mechanism diminishes structurally. Regional inequity is reduced because the clinical information flow allows care across the national network, not only in central hospitals. Centralized negotiation for rare diseases restores power symmetry with industry. Automatic transplant matching makes a today-opaque decision public and traceable.
What ARTERIA promises about high cost is what the current system promised and did not deliver: timely access, clinical continuity, regional equity, expenditure transparency, structural financing without toxic friction. The commitment is operational, not rhetorical.
Version: v1 — 2026-06-12 Next review: after consultation with IETS, INC, INS, ACEMI, ACHC, the Ombudsman's Office, scientific societies, patient foundations.